Arthrofibrosis (from Greek: arthro- joint, fibr- fibrous and -osis abnormality) is an inflammatory condition that leads to the production of excessive scar tissue in or around major joints. These joints can include the knee, shoulder, ankle, wrist, and hip.

Arthrofibrosis can be the result of surgical complications or initial injury to the joint. Infections and/or bleeding into the area are believed to be major causes or contributing factor involved in the disease.

Arthrofibrosis is one of the major complications of ACL surgery and is one of the most difficult to treat. Whatever the cause may be, the excess scar tissue limits range of motion (“ROM”), functionality, and can be painful and debilitating.

Specialized care is required in the treatment of Arthrofibrosis, and only a handful of orthopedic surgeons in the world have a significant amount of experience treating this condition.

The Arthrofibrosis Foundation website was created to provide a resource of information, a community of support, and the financial assistance needed to help patients receive the care they deserve.

709 comments posted

Does anyone know if Arthrofibrosis qualifies for disability? I’m scared of becoming homeless because of my knee. It doesn’t bend and I have so much pain from trying to walk. How can I return to work when I can’t stand for more than a few minutes at a time? I’ve just been diagnosed even though I suspected this for several months. I’m on worker’s compensation at the moment but that won’t last long. I’m so worried about supporting myself now. I have no idea what to do.

Dr. David Mayman @ HSS in NYC is a wonderful, knowledgeable, compassionate doctor. He has (had) a trial study. Perhaps the study is still open. Unfortunately Dr. David Mayman was not able to help my knee (I’ve had eleven surgeries,3 Total Knee Replacements on the same knee.) Now, I’ve been told that doing more surgery might make my knee worse. It’s heartbreaking to know that I, who use to be very active in casual sports, and working out 3 – 4 times a week, will never be out of pain, will never be able to partake in sports that I use to enjoy. I went to Chicago hoping to be cured by Dr. Henry Finn. But that didn’t happen. Good Luck. If you meet with him you can tell him that I recommended him to you. Laurie L.

Had a tibia fracture that resulted in bone not being straight. Dr. Told me TKR was my only option to correct that. Had left TKR May 2019. Although I do have ROM of 105…I still have a lot of symptoms that seem like arthrofibrosis. I am stiff 24 hrs a day and exercise does not help. The more I exercise the stiffer my knee gets. I cannot go down stairs normally. I am an active 65 yr old. My Dr is telling me there is nothing more he can do. I am having a hard time finding a Dr to give me a second opinion. I am not ready to give up! Does anyone know any Drs in the east who are familiar with the condition. I have tried all kinds of things besides PT…Astym Therapy, sports massage. I am in NEW YORK. Any suggestions would be appreciated!

I’m writing this at 4:30 am on a work night/morning bc I’m in pain and can’t sleep. I’ve been scrolling the internet for about an hour researching arthrofibrosis and anyone with a happy ending. I haven’t found any. I came across this website A few months ago and wasn’t hesitant to post because it’s a long paragraph of complaints. But I’m desperate and I’m hoping maybe someone knows something or can give me hope. May 7th 2019, I slipped and fell. I was stubborn and waited to go to the doctors until the pain was unbearable. That was June 3rd. Diagnosis was ACL tear and I was braced. I’m referred to a specialist. I see a PA at my local orthopedic clinic by mid July, I believe. Doesn’t even look at my knee and writes me a script for PT. I begin PT, following all that’s asked of me with zero improvement. I go back for my follow up at ortho. Begging for relief. I can’t bend, can’t straighten, my whole body is in pain from my inability to walk normal. (Meanwhile, I’m still work my active job) This time he orders an MRI. It takes weeks for insurance to approve it. When results come back, they tell me nothing is wrong. Although my knee is the size of a cantaloupe and hot to the touch. My orthopedic PA orders more PT. My PT tells me to remember that nothing is physically wrong with me, and everyone is making me feel like I’m making this up in my head. 3rd check up with PA. He finally decides that the swelling is abnormal. He numbs my knee and tries to remove the inflammation with a giant syringe. Nothing will suck out. It’s not just inflammation, it’s coagulated blood. Just stuck in my knee. He finally decides that’s he’s has no idea what’s going on and refers me to a doctor. I continue PT and finally get in to see a real doctor. The MRI, he said, was garbage and the worst imaging he’s ever seen (I was sent to a random imaging facility 2 hours from my house). He said instantly when seeing all the swelling in my mri that it’s arthrofibrosis. Arthro-what? And it’s so bad I need arthroscopic surgery. Denied by insurance, I fought to have it covered. They finally agreed, but held up the process for months. January 29th 2020 I had surgery, almost a year later. Turns out I also had a lateral meniscus tear. My knee was scraped, meniscus repaired and I had a manipulation. My other leg had developed problems, and my ankle on my non injured leg has become chronically swollen from over use. I have patella subluxation in my uninjured knee now. Following surgery, I went to PT 4 days after. Twice a week I go, do all my exercises as prescribed. Right now I can’t go because of corona. Although there has been improvement…I’m 5 degrees off from straight now! (Horay! Prior to surgery I was 20. No improvements on that since surgery tho), and I’ve managed to reach 120 degree flexion with a ton of pain and force. I’m in Constant pain. My back, my hips, my neck. I can’t walk normal. My legs swell. Is this forever? I was active before…rugby, competitive in CrossFit, obstacle course racing…now getting off the couch is a challenge. I can’t walk my dogs, my whole life is gone. Is this forever? Does it ever get any better than this? I was so excited for surgery and to get back to my old life, But it’s so far from normal. The closest I get to relief is when I load up on Advil all day and that’s not a sustainable solution, let alone not enough relief to be worth the long term side effects of that. It’s been 3 months since surgery. Is all this still normal? Help! I’m 31 and just need my active life back.

same here, a hospital PT tried his best to tear my leg off grabbing me by the ankle after my 91 degree chair bend and said, I think you have more in you than this and at a conturked angle pulled my leg to a 112, give or take 3 angle and beside the chair. I thought I would flip up out of the chair. Never had so much pain

I am having arthroscopic surgery to remove scar tissue/arthrofibrosis in my knee in a few weeks. Seeing Dr. Goden at The Steadman Clinic. He will give me Losartan which acts as an anti-fibrotic as well. Steadman Clinic has world class orthopedic surgeons. THey are in Vail and possibly elsewhere in the US

Hello – I was diagnosed with AF last month after a ski accident in January. A skier ran over me and lacerated my quad tendon as well as the anterior portion of my knee. I underwent an emergency surgery that day and started aggressive PT after 2 weeks of being mostly immobilized. I thought “aggressive” PT was the only way to make progress in gaining ROM but after 2 weeks of pushing through the worst pain of my life, I knew something was wrong so I worked with my PT to adjust our approach and I’m so glad that I did. My extension is fine but flexion at 11 weeks post-op is only 52 degrees. Like others in this group I have felt moments of despair, fear, frustration, sadness, anger…but I am trying to remain hopeful.

Given Covid-19 I need to wait for an orthoscopic release and MUA, hoping that can be done in May.

Has anyone had success with this surgery? If so, any tips for PT after the surgery?

Is it common for AF to return AFTER this process?

For what it’s worth, some things I have tried and have seen a good response as far as pain management and increased ROM: acupuncture, joint active system brace I wear 3 times/day for 30 mins, cryotherapy (I bought an ice therapy machine on Amazon and love this thing), added Serrapeptase, Fish Oil, MSM and Turmeric to my daily supplements. My doctor said we could try cortisone shots but outside of that, he was not aware of any medications to treat the condition.

My case may be a bit different from yours, however, the more I read the more I can’t help but feel like I may be suffering from arthrofibrosis.

On April of 2011 I had a received a full limb salvage surgery of my left femur due to stage 4 osteosarcoma at the age of 11. I received years of physical therapy that led me to about 90 degrees of flexion with assistance and 60-70 on my own. After 4-5 years of PT, I decided to end it and moved away for college. I noticed that with time I lost range. I was maybe at 50-60 degrees of flexion then, which was nothing but it was my normal. This was around 2014-2019.
During those years I was able to function and live a pretty good life, which including going to the gym. Yes, I had pain in my knee every so often- but it was SO much more manageable than now.

Long story short, I found out on Oct 2019 that I had fracture on my left femur (no one knows how exactly, but they say it was caused by the donor bone weakening due to time + the stress the screws I have drilled into it that hold it in place)

After a failed grafting procedure, I had no other choice but to receive a revision of femur fracture with a total knee replacement on 12/18/19. Pain wise, i had made improvements within the first month, but after month 2 the pain came back at full force. I could barely do any kind of PT exercises and my therapist even noticed i was regressing. The pain is completely worse than it ever has been. I have lost more mobility than I initially had (even with physical therapy- which i started again since my replacement- but have stopped since COVID-19).

Right now I feel at my wits end.
This does not feel like a “life” to me. I am desperate for a fix.
I am now 23years old and I can’t imagine having to live a life with this pain and stiffness. I can barely play with my 2-year old. I don’t even want to think about more kids…

lately i think about just holding out until she’s 18 and if the pain is still there, i’ll just call it.

I have had arthrofibrosis for 14 years, ever since my knee replacement in 2006. Despite every effort I made, including a partial revision which removed excessive amounts of scar tissue, it returned worse than ever and I have been suffering for all this time with no relief. All surgeons I have told me there is nothing that can be done. The stiffness is often unbearable and never ceases. Has anyone had any luck finding a knee wrap which may give some support?
I have also been told not to do any more surgery on this knee.

I am losing all hope. The Arthrofibrosis is back. I would like to know if anyone in this group has had success with arthrofibrosis? If so, what has worked? I am feeling desperate and hopeless, but mainly just tired of the pain. I had a TKR in 5/2018. MUA 8/2018. 4/2019 Conversion Knee Arthroplasty with a hinge. 12/2019 Replacement of the knee component of the Conversion prosthesis. I have had my knee aspirated more times than I can begin to remember (7 times from 1/2019). I have followed PT to the letter. I have taken Losartan to see if it would help(it did not). My ROM for extension has drastically improved from the last surgery. My flexion has gone from 115-65 in 6 weeks. My surgeon and rheumatologist decided to attack the arthrofibrosis as an auto-immune disease. I was supposed to start Methotrexate and Colchicine, but with the current state of the world, the rheumatologist has suggested I wait on immune suppressants. I am beginning to feel the best solution might be to remove the leg from the knee down. Honestly, I am looking for hope.

Hi! My story is a few comments down but I’ve had arthrofibrosis for 2 years. I started methotrexate 8 weeks ago but have yet to have surgery (won’t until this pandemic is over). Nice to hear someone else is on this course. I’ll certainly share my results.

I’m in the same boat as you but at least your. Doc is trying something mine is not. I to have been wanting amputation above knee my quality of life sucks leg is stuck at 68 flexcion and 5 on extension if I don’t keep my straight leg brace on my fibrosis gets so bad I can’t walk and I have to use wheelchair they also won’t give pain meds so I drink my self to sleep I guess it’s ok to be an alcoholic. I’m sorry your in this same sinking boat I hope you get better care then I

You and I pretty much have the same story, except for when we had our surgery. A few weeks ago, I felt like amputation might be the best option too, because I was at wit’s end just like you. I regrouped and realize that keeping the leg is most important. I have been using Icy Hot menthol patches that normally are used for your back. I use them on my knee, and they give me a lot of relief. I also soak my leg in Dr. Teal’s Pink Himalayan salt or Epsom salt. I am sending positive energy your way. If I learn of any other things we can do, I will share that with you when I can. Until then, I wish you hope, patience, and strength to deal with the pain.

Does anyone know of a hand/wrist specialist who had experience with arthrofibrosis? I’ve had multiple ‘clean ups’ to remove scar tissue, only have have it come back thicker and more painfully than before.

I had a total knee replacement 27th Feb 2018
After physio and realising my knee kept swelling and stiffening up my surgery said I might have arthrofibrosis, I’ve had no examinations or tests to prove or disprove this diagnosis
I’ve had two MUA’s and a steroid over the first 18 months, my surgeon then suggested replacing the 10mm liner with an 8mm liner, I have become sceptical as to he’s suggestions
Am I right to doubt him, or should I let him keep trying things?

I’m in a similar predicament. My surgery was in 2015 and had 2 MUA’s still doing poorly. Recently saw a surgeon that suggested doing a low dose of radiation shortly before surgery to keep the scar tissue from forming in the area. I’ve researched that idea and it’s been successful for those that have had it done. I haven’t scheduled anything yet as he wants me too do a blood test and bone scan to make sure I don’t have an infection or any loose parts. So to answer your question, talk to your surgeon about this procedure and if you’re ever in doubt get a second opinion. Hope everything works out for you!

I’ve been struggling with arthrofibrosis since a horrific kneecap dislocation in March 2018. The following is a list of my surgeries/procedures. My patellar tendon actually adhered to my tibia and snapped during a MUA. After this reconstruction, my ROM increased to 50°-60° but gradually stiffened again. I don’t believe the genicular nerve treatments or any other pain management treatments have helped.

I’m currently seeing a rheumatologist and taking methotrexate for suspected, but not formally diagnosed, psoriatic arthritis. The thought here is that suppressing my immune system will discourage scar build up after another open release of the patella.

Any thoughts or recommendations? I’m at my wit’s end. Thanks in advance!

3 years ago my brother and I was sparring in jiu jitsu and my brother felt a sharp pain and the next day he had a lump behind his knee. He went to the doctor who then told him it was just a bakers cyst and to just work through it with a physio and it will sort itself out. After two weeks it dispersed and with pain my brothers knee swelled up and was unable to bend or straighten his knee. This meant he had to quit work until he could see a specialist. 3 months later he was told by the specialist that it was a bleed in the knee and it had caused scar tissue. 3 years later two surgeries in and no difference in his knee, he says he doesn’t get pain anymore but he still can’t bend his knee and his muscles have started to shrink on his legs. He followed all the exercises post op as he is addicted to training and for the second op he was in a full leg splint to keep it straight but it just bent back again. He has been offered another surgery but he is disheartened by the whole process and he has three kids which he always wanted to teach jiu jitsu to. I think he has given up on his knee now he is only just now turn 40
there must be other procedures that can fix this problem right????

I’m just learning about FSM from this website. I’ve been disappointed in my treatment since my ACL/meniscus recon last year. I’ve had two scar tissue MUAs/scopes including lateral capsular release. I can barely walk, with extremely limited range. Do you think FSM is effective enough to address my scar tissue filled knee? I don’t understand why it’s not publicized more if it’s so effective.

Hey guys, I have had arthrofibrosis since April 2019 following a fall resulting in complete tear of ACL and meniscus tear. After many months of painful and not successful physio therapy (both private and NHS in UK). My knee was at -40 on extention before I had an arthroscopy operation. Post op it is now at -10. I can recommend the following treatments. 1. Tuina (Chinese massage which stimulates blood circulation in body. On my 1st session of this I noticed a difference to my leg. 2. Frequency Specific Microcurrent (FSM) Treatment has been a LIFE CHANGER. I have just had my 3rd session out of 7 that I have booked. FSM works by stimulating ATP (energy) to cells that breaks down scar tissue. I can actually feel the tissue turning to mush. I am self-funding both of these treatments which are expensive but I believe you can get them if you have private health insurance. I am based in London, UK. If you want further information about clinics I use or any other info please email me at rld8 at hotmail dot com. xx

I am 14 weeks post op TKR of my left knee. I had six weeks physical therapy where I progressed to 103% flexion. I was doing really well. My surgeon released me from PT and told me I could just go to my local gym and do the recumbent bike and swimming, which I did. Then, at 10 weeks out, I started experiencing severe pain and stiffness in my knee, after standing for 2 hours one day. Ever since then, I have been in chronic pain going on 3 weeks now. I went back to my surgeon’s office and they claim it’s scar tissue. After doing research on Arthofibrosis, I’m convinced this is what I have. Should my next step be an MRI?

Post op TKR two years.Arthrobibrosis set in early after surgery.I Have started the CHANG SHAN with amazing results.It has taken the stiffness away close to 75% so far immediately after taking.I have been on it for a week now.I take one full dropper full three times per day.I have done nothing else for it so far.Thank you so much Denn.

I am a 53 year old Male diagnosed at age 18 with a bone disease in both legs called Osteochondritis Dissecans, or bone death in Latin. I had 3 major surgeries starting within 1 week of diagnosis which helped save 2 large pieces of damaged bone in both joints. Several years later I had multiple arthroscopic procedures to remove pieces of bone and cartilage. After several other major procedures to try and save the joint that failed I had both knees replaced at age 33. Unfortunately I developed Arthrofibrosis post TKA in both legs on top of the underlying bone disease which is extremely painful. Over the next decade I had 10 arthroscopic procedures, 5 on each to remove debris and “clunk” that developed super aggressively. About 5 years ago I had the same procedure followed by radiation 24 hours post surgery to try and kill the cell bed causing the out of control tissue development but it failed as well with pain returning immediately. I just found out I have to have major reconstructive surgery on my right TKA caused by the Arthrofibrosis building tissue around and under my kneecap which will be surgery 27 plus 6 on my shoulders with similar out of control tissue problems.

During most of this time I have been a chronic pain patient due to the severe bone pain which had been treated with large doses of narcotic pain medication (Oxycodone, Oxycontin, Fentanyl lozenges) which not only only worked but I also took as directed and am alive today but I am in severe debilitating pain because of the limiting of pain medication due to the “opioid crisis”. I don’t understanding how the limitation of my needed medication for a diagnosed medical condition requiring 27 surgeries helps people overdosing mainly from heroin and fentanyl with a few from prescription opiates mostly obtained illegally on the street. Through my research I have still yet to find anyone in a legitimate chronic pain program that has died from taking their pain meds AS DIRECTED. I have wondered if people on the streets start getting “high” on insulin if diabetics will either be refused insulin or get very small amounts that does not treat the condition. If it sounds like I am angry about this situation I am because the illegal activities of others have drastically impacted my quality of life. I know I am not the only patient facing this situation. As I have gotten older with a problem getting worse causing more pain my medication has gone waaaaay down, the opposite direction. In a second opinion I got some feedback which was “have you tried Advil with PT”– all I could say was “Seriously?”

I would like to talk to other people in a similar situation and ask how they are treating the underlying Arthrofibrosis and the pain caused by it. Through my research it seemed like the best interventional procedure was the clean out followed by radiation, I haven’t really come across anything else. I am not in a position where I can just live with this type of pain–it is destroying my life, I just want some relief……

Aloha everyone – I am back again to say that the halofuginone (Chang Shan) is continuing to work miracles but not just on the arthrofibrosis of my knee but soft tissue everywhere – rotator cuff and hands and feet where I previously had tendonitis as well. This is the first time in years and years that I do not wake up stiff and in pain. As with all TCM (traditional Chinese medicine) continued use is recommended. I also swim in the ocean and do stationary bicycle. It looks like if you tend to build up scar tissue you should avoid MUA, removal of scar tissue, TKA revision, or aggressive PT and never push through the pain as all of these things just trigger a strong immune response. While the risk of falling and the restriction of ADL’s make you a high risk for fracture and many activities experts I have consulted (orthopedic surgeons, PT’s and RMT’s) and other patients who have had a TKA agree – time, patience, and gentle ROM may be the only option to prevent and reduce the damage.

I started using the Chang Shan after reading your post, use it three times daily. Now, after almost ten days of use. I am not feeling any changes in ROM or changes in stiffness of the scar tissue around my knee. I am hoping others who started using it start sharing their experiences as well so we have more data on efficacy of this natural solution.

Would like more info on halofuginone: is this an herbal pill you take ?
If so what dosage and can you recommend a place to order it from ?
I had a TKR in February 2018 and have a stretchy tight sensation that has never gone away. I had a MUA following the surgery but it didn’t really improve anything Would appreciate any info you can give me on this.

Hi Denn,
In what form are you using chang shan, a cream, oil, tincture or just what? I’ve been fighting arthrofibrosis for years, including surgeries to remove it but it grows back with great enthusiasm. Don’t even know yet if I can find it in Canada but really would like a bit more info on how you use it and in what form. Thanks in advance if you can answer this question to you. I’ve had on knee replacement with two revisions. After each surgery I was told to fight thru the pain as really strenuous rehab was the answer. It only succeeds in building more and more scar tissue, in fact. A recent study has suggested that though this has been the approach, it is now recognized that only gentle movement that doesn’t tear up the tissue is definitely best. I ride a stationary bike daily and might be seeing a small improvement but very interested in your experience with this chang shan. Any help would be appreciated.

I saw the post on Chang Shan and am researching it as well. You can get it on Amazon. You may want to look up halofuginone as chang shan is derived from this. Apparently this inhibits an enzyme that in turn inflames tissue. Also, I understand that it can induce nausea so you may want to go lightly at first. I am still in the process of reviewing it but I intend to try it out. Let me know if it works for you

Had knee ORIF surgery back in 2016 when I was 33 after I shattered my kneecap (communited displaced fracture). Only have half my kneecap now held together with pins & wire. Bc of the arthrofibrosis I’ve only got 80° flexion and even getting to that level of flexion took months of PT & using a Dynasplint. In the process of getting a 2nd surgery scheduled to clean out some of the scar tissue & do a light MUA. I’ll never get past 100° flexion even with surgery though bc my patellar tendon is shortened & too scarred down and could snap if pushed further.

I really wish both my original surgeon & I had been informed about this issue bc I’d had scar tissue issues with dental surgeries too, but never knew it could be connected nor was asked about it. I’m grateful for sites like this bc it helps patients like me be more proactive about our care & surgery protocol.

Looks like Halofuginone really does work – also started taking naproxen again. Every BODY is different but I have tried everything external and internal and after months and months nothing else has reduced the pain or increased the flexion. Does have side effects though – fatigue and headache.

I bought this on eBay – only $20 for 4 oz. – it is called Chang Shan (AKA Dichroa Febrifuga) – the company is based out of Honolulu, HI. and is organic, no GMO’s. I am taking it 3 times a day in water. I have been using TCM for over 40 years but I could not find this in any of my Chinese pharmaceutical texts, however, I could NOT believe the difference after just 3 days. As I do not take any other medications or drugs of any kind (no opioids, marijuana, prescription meds) or do anything different than any other day I thought it had to be too good to be true – I would recommend a try as PT and surgery is not recommended. Swimming in the ocean, gentle Tai Chi (if you can even bend that much) and a stationary bicycle seems to be the best. Let me know how it works for you. I did find it makes you drowsy and I also got a headache but the side effects seem to be dissipating. Good Luck!

Like all of you I naturally build up scar tissue and it happened early on for a TKA back in March 2019. One week post-op I developed severe muscle cramps lasting 2-3 hours – in four different muscle groups. Not ONE doctor was able to diagnose “lactic acidosis” and blamed it on dehydration, medication, or electrolyte deficiency. As I take 800 mg. of magnesium every day not likely. I blamed it on a combination of hypoperfusion from the surgery and blocks and then aggressive PT. I had to tell them to give me Ringer’s Lactate and within 5 minutes all was resolved. No matter what I did I never was able to achieve good flexion even with aggressive PT, swimming, bicycle, etc. Then I fell and basically did my own MUA (manipulation under anesthetic WITHOUT anesthetic) – fortunately no bones were broken but again, aggressive PT only made things worse. I finally saw the top orthopedic surgeon available hoping he could remove the scar tissue but he said it had a very poor success rate. He did recommend bicycle so I am doing that, swimming in the ocean, Epsom salts, massage over the knee, and using oral halofuginone (Chang Shan) the latter supposedly could help with dissolution of collagen in well-established arthrofibrosis. Hopefully, time, patience and NO aggressive PT seems to be the only option as a revision is way too risky for people with osteoarthritis and osteoporosis. Great to be able to share the frustration and pain we suffer with others – my greatest fear is tripping and falling as I cannot lift my foot properly. BTW, aggressive PT is definitely a culprit after surgery – if I ever have the other knee done I will just jump into the ocean and do my stationary bicycle.

I agree I did aggressive with one and not the other and both had the same outcome some people just have huge scar response after surgeries and I’m one of them and have been suffering since my knees we both done in 2017 my life has FOREVER changed for the worst

Yolanda : hi l had a knee replacement back in 2017 and was told to follow up with physical therapy l did all my follow up with physical therapy and nothing has work my knee became painful and stiff l was asked by my othorpedic to come in and have a MUA done but l was in total fear to get it done so l remain with this stiff knee up to 2 years in 2019 Oct 10 l had a knee revision l had extensive aggressive physical therapy no improvement lm still here March 8 with a stiff knee and pain is their any thing else l can do my doctor said he can not do any more for me this is my second total knee surgery he said l can loose my leg and even get an infection if l go for a third knee surgery.Any suggestions of what and how l can get over this disabling pain?

Had a TKR 1/30/19. MUA 3/5/19. Revision 6/5/19 was supposed to be to replace prosthetic but found arthofibrosis. Cleaned out then. Very aggressive PT 3 times a week starting 5 days after surgery. Slept in flexion splint at night and extension splint at least 5-6 hours daily. Arthofibrosis has returned. Seeing specialist in Dallas for second opinion to replace prosthetic with hinged type mechanism to reduce/eliminate arthofibrosis. Constant pain in knee and hip. Need other knee done but may just live with that pain instead of another TKR.

Hi Drenda. I have a similar story. RTKR 2018 / MUA 11/18 / Revision 2019 to replace the poly component with a slimmer piece (this improved extension) / Arthroscopy to remove adhesions 2019. All of this and flexion max is 86. I had 110 pre op. I have not heard of an alternative device that could limit AR. If you are still monitoring or posting on this site please let me know what you have found.

Robin, after seeing specialist in Dallas, he ordered a three phase bone scan. Went over it with him last week. He found the prosthesis is loose on both sides in several places. He is replacing the prosthesis. He isn’t convinced there ever was arthofibrosis. Said he would be able to tell me more after surgery. He is booked so far in advance that I am having to wait four weeks for the surgery (2/6). Can update you after surgery.

I would like be to know the outcome of your 2/6/20 procedure! I had TKR in 2012 with tightness of scarring and pain. In 2016 had a Total Knee Revision due to knee becoming unstable because of problem with the replacement becoming loose. After that surgery, developed severe Arthrofibrosis and my flexion is at 11 degree and bend is less than 90 degrees, and bending continues to be reduced. Knee is extremely painful, my leg has now become a serious disability.
Looking for some options out there to give me a knee with improved mobility.
THANKS!

Post TKA one year. This is my second tka on the same knee in 11 months. Very aggressive arthrofibrosis formed very quickly. Did manipulation twice, months if therapy, surgeon says nothing else he can do. Rom about 70 and a great deal of pain.
Very frustrated. Surgeon attitude is I’ll have to live with it..
Ray

I also have been diagnosed with Arthrofibrosis. 6 months out from TKR. I found a physical therapist who administers the Graston technique. (you can research that)It has helped me with pain management quite a bit. Its good on all kinds of aches and pains. He did it on my sore back that came from overcompensating for my lack of extention. It has worked pretty well. I recommend trying it.
Also having searched the web everywhere for answers, I came across an article about a case where they did a revision using Low dose radiation to shut down the build up of scar tissue. It worked for that person. It was out of Chicago. I don’t know why they cant use that during a Arthroscopic surgery. I told my Dr. about it and said he could use me for a trial run. He just said if I need a revision he could help me find someone who does that. Anyway good luck to you all!!

I had a TKR in February I could tell immediately something was weird. I’m a pain slayer but this was different. I did PT and yet my knee kept locking up. PT was extend, water aerobics, more PT I would allow them to bend my knee and scream bloody murder trying to break it free. Had a manipulation, was exercising before I left the host determined to not allow it to tighten. More PT Dr checked for infection, MRI, trying to figure why my knee has only 90* flexion, and looks like it’s made of cottage cheese!!!! He has no clue told me he’d look at it again in February next year.
I live in Alabama Are there any doctors in the state or surrounding that deal with arthrofibrosis as I read about it I believe this is absolutely my problem. I’ve gone from a extremely active person to one who trips in grass because my hair is so impaired

Hi, Elizabeth,
My experience with Arthro Fib has not been a good one. I’ve had a TKR with two revisions now. But, from the first surgery I learned I had arthro. I had the scar tissue cut out after the first surgery by arthroscopy surgery but, of course, it grows back with unlimited enthusiasm. I live in a relatively small town in British Columbia (pop = appx. 12,000) but has numerous physio outlets. Not one of these physios had a clue about the condition but informed me at the beginning of treatment they knew how to deal with scar tissue. They did not, however, know how to deal with this rare and debilitating form of excessive scar being laid down. I am one year since my second revision and have included things like very deep tissue massage and am going to try pilates, why not,I’ll try anything. I’m sorry I’m not giving you any good news. I know how painful this condition surely is for you and how much it restricts ROM. If any of my many attempts to help this condition actually work, I will email you again. Bet of luck and keep on moving that joint, otherwise the consequences are indeed dire. If you have either a stationary bike or a real bike, ride them. Do not need a lot of tension on a stationary as the idea is just to keep bending the joint. I do this on a regular basis and it, at least, keeps me at about 90 degrees ROM.

i had a total knee d ios,replacement at only 43 years old.I have arthrofibrosis and complex regional pain syndrome. I had a closed manipulation 6 months post op and my surgeon didn’t ever see me again.my pain is 24/7! i have 90 degrees rom. i cant do stairs its awful on my lower back and hips.i am barely able walk having crps and arthrofibrosis any ideas to help me?

I had a TKR September 29, 2019. I had a MUA on November 4, 2019. One week and still using a CPM approximately 8 hours a day. I can feel my knee stiffening up again. Did anyone have a very aggressive PT routine seeing a therapist 5x a week for two weeks after a MUA?

Has anyone had any success with cryotherapy?
I live near Cleveland, Ohio.
Phyllis

Hi – I had very aggressive PT in Chicago – Dr. Finn — no success, and even though I asked him (Finn) to do the MUA sooner, he refused. Later he performed a MUA, and was so determined to get my knee to bend that tore a muscle deep within the knee area. I kept bleeding when I exercised so I had to stop PT for bit….VERY DISAPPOINTING a supposed 2 week stay lasted 2.5 months away from home, which I would have been fine with if all was successful…but not. I have pain 24/7…warm to touch, hugely swollen. Cannot walk down stairs properly no running at all, disabled for life.

I tried so many different pain reduction therapies, including cryotherapy. It did not help me at all. My main concern is when I m older…what will be??? Take care.

I had a TKR on my left knee in September 2018 resulting in arthrofibrosis and bend of only 90 degrees. I then had an MUA 8 weeks after surgery which, after much PT, resulted in the same bend of 90 degrees.
I now have pain in my right knee due to arthritis and want to know what the risk of the same outcome
following a second TKR.
How do I find a surgeon who specializes in avoidance of arthrofibrosis in the second knee?

I recently was given 3 samples of 500 mg cbd cream. I used it several times over 2 days. I found no relief. Scar 5issue continues to tighten and restrict movement. I also slowly dissolved cbd gummies (am and pm), also with no result. I wish I could report better results. Read an article that all most no cbd is absorbed across intestinal wall.

Hello, I had left tkr on May 17, 2019. It’s my 5 month anniversary of surgery. From the beginning I could tell I was not like others in my PT group. I had a mua at 6 weeks. Within 2 days I could tell nothing much had changed, but the doctor assured me I had 100 degrees of flexion at the mua. My current status is never more than 60 degrees and the scar tissue tightens horribly with activity. I’ve had 2 opinions and all suggest waiting for 12-18 months for arthroscopy surgery. I’m 66 and was very active before surgery. My life has been ruined by Arthrofibrosis. I would not mind the loss of function, but the pain is excruciating. I am hoping that someone in your organization can help me. I live in south east Pennsylvania. Thank you so much.

I had TKR back in December 2016, followed by severe arthrofibrosis condition which lasted through one MUA and three other surgeries to remove extensive scar tissues, only for the tissues to come back just weeks following all surgeries. I now feel the best I felt for years mainly due to the article provided by Mary in July :https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/

It is a long article, summary is you need to control and reduce inflammation which triggers growth of the scar tissues. I started gluten-free diet, low sugar diet and to my surprise the scar tissues are not as thick and painful anymore. for the first time in almost three years I can move without pain or with very little pain. I strongly recommend for everyone who is suffering from this debilitating arthrofibrosis condition, to try controlling body inflammation though diet and focusing in anti-inflammation foods (banana, peppers, probiotics, Omega 3-6, generally use gluten-free products which can now be found in most grocery stores) replacing bread, bagels with gluten-free alternative can make big difference to minimize scar tissues, as well as for your general health.

I wanted to share my experience, hoping that I can help others going through the pain and anguish I have gone through for 3 years.

Thanks for posting this. I had a TKR Feb 27 this year. I required a MUA on April 10. Currently, I only have about 90 degrees flexion, but thank goodness, I have 0 extension. I don’t walk with a limp, but I have issues with other things. I now will have arthroscopic lysis of adhesions on Oct 28. Keloids run in my family and I was looking for any pointers. I’m going to try this diet, maybe even starting pre-op.

Hi Shayla,
Just came across your post from October saying you were about to have arthrolysis surgery and wondered if that’s been done and what the success was. Hopefully you come back to this site and find this reply. I’m considering asking for it but thinking it will come back no matter the effort put into rehab.
Bob Munson

My husband had tkr in 2007 and they redid it in 2008 because of the pain & stiffness. He had several MUAs but still only has 70% and lots of pain.Finally diagnosed with arthrofibrosis. He recently had a bad reaction to Cipro which tore his rotator cuff, messed up tendons, etc. He can’t lift his arms. They don’t know how to treat this and I’m beginning to wonder if he could have arthrofibrosis set in his shoulders. He is in extreme pain. Just wondering if you’re a candidate for it the first time if it would appear in the shoulder.

Sherri, arthrofibrosis in the shoulder is “frozen shoulder.” I had it following rotator cuff surgery even though I did all the pt at home and at the clinic that was ordered. All the research I found pretty much stated it could last 2 years. I couldn’t lift my arm all that time but eventually my shoulder returned to normal without doing any special therapy or surgery. I now have a frozen knee following a replacement even though I followed all instructions for home exercises and clinic visits

I’m researching this for my dad. He had a knee replacement 2.5 years ago, followed all orders and PT and was in severe pain with swelling constantly (also did manipulation). Another surgeon talked him into another replacement 2 months ago and was hoping for better results. Lots of scar tissue removed during surgery, but he’s no better now than before (did another manipulation 3 weeks ago). He’s gone from an active, healthy, busy 74 yr old, to a depressed, near handicapped man. He has a super high pain tolerance in general, but he is miserable now. He’s in Chattanooga and I’m in Atlanta. Are there any specialists in the metro Atlanta area to recommend?

I had RTKR back in August of 2017 and I haven’t been the same since then. I did my PT and no matter what we couldn’t push past 75 so thats when we did my first MUA and my OS felt very positive because he got my bend to at least 90 so I was hopeful but I didn’t keep the ROM. I went with some more PT for another couple of weeks and then he did another MUA. Im now about a year into this new knee and Im miserable. Both of these MUA’s did nothing so I was directed to a pain management clinic and they wanted to try a genicular nerve block on the knee so I could push through and guess what, it didn’t work either. I went back to my OS in March and we said I wasn’t at the 2 year mark yet so just give it more time. Well i was taken to the ER back in May because my other leg was in excruciating pain and was told I have a bakers cyst behind the left knee and to go see my OS. Im obviously putting more on my left leg to compensate for the right. He told me i have arthrofibrosis and theres not much he could do . I practically begged him to do one more surgery on my right knee to cut out the scar tissue and start the healing all over. He agreed and on June 26, 2019 he went in and found something that he wasn’t expecting. He said the tendon that he cut for my initial surgery was blocking my scar tissue from breaking up.He said he removed the tendon but I feel that Im not getting any better. The pain is excruciating and my left knee is killing me. Im so afraid of ending up in a wheel chair. Im in Michigan and if anyone knows of any specialist in arthrofibrosis, please let me know.

Try to find any cryotherapy clinics. Not surgical and is not guaranteed to help 100% but it helps with arthrofibrosis and it will relieve inflammation. Also try to find a sports massage place so they can scrape your knee. This will break up scar tissue.

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Hello group,
My story is similar to many of yours and I am looking for an arthrofibrosis “specialist” in the Boston area (there should be many here, but no one “advertises” that specialty and good luck finding…)

I am 52 and had TKR on March 5. Within a month it was clear that I had egregious arthrofibrosis and had MUA on May 20 which did help a bit. He said he removed more scar tissue than ever w other patients so I don’t know if that indicates how bad my reaction is? I have new scar tissue at the arthroscopic sites.

I can’t break past a 75 degree bend (w constant work) and pain is constant. I won’t go into how awful this is – you all know!

My surgeon who is renowned for this work (I went to him cause other PT patients where I go have the “best outcomes” from him) but he seems to have little interest in the small % of patients like me, who don’t have great outcomes. He just keeps saying that I have a “low threshold of pain” – as if 1. that matters and 2. that’s a reason to dismiss me.

At first he was very confident that – no matter what – we would get to full ROM, but now he’s kind of throwing his hands up and saying that with another MUA we might get to 90 degrees and ‘that should be good’. Would that be good for him??? He initially said a revision might be the solution and now he’s even questioning that. Is that because the scar tissue cycle will just return after a revision?

Do any of you have that experience – should that be a concern?

I’m scouring pubmed and other sites to look at how scar tissue can be limited – no luck yet. I thought of seeing a rheumatologist, but no one is available for months and surgeon says that’s a waste of time. I have lost ability to work (concentrate) and my life is sh*t, as you all know. Any help pointing me to research (I will look at Nature.com) or more importantly – SPECIALISTS in the Boston area (or NY? I will travel!!!) would be greatly appreciated.

Sorry to hear this. I could have written this myself. Mid-50’s, two TKR’s, surgeon says i have a low pain threshold and wants nothing to do with me. ROM about 85-90 degrees. Live in Boston area and can’t find anyone to take this on. Miserable!

I am a physical therapist and I have seen several cases of arthrofibrotic knees after TKR. Everything you all have described in these forum posts is the classic clinical picture of arthrofibrosis. I would just like to offer a suggestion of a direction to look/research for possible help. The one thing I have seen that helps arthrofibrotic knees in the post-op (still healing, not long-term down-the-road) period is something that falls under the generic term of instrument-assisted soft tissue mobilization (IASTM). There are many “brands” of it out there. The most well-known is Graston, but I will caution you up front to be wary of Graston as it is “can be” what I would call “aggressive”. I say “can be” because it depends on the practitioner delivering the treatment. Some of them tend towards aggressive treatment and you absolutely don’t want that with AF. However, some are most judicious in their approach and have an understanding of the nature of AF. I am attaching a link to an article of a case study of treatment of an AF knee after a patellar tendon rupture repair by one of these judicious Graston practitioners. The results are pretty impressive. Another “brand” of IASTM is AYSTM. AYSTM does not have a reputation as an aggressive treatment. There are other “brands” out there, but all of them utilize the same general premise of using a tool to break up scar tissue and adhesions. Practitioners of Graston & AYSTM must go to training seminars and pass a clinical proficiency test to become a certified practitioner. It is VERY expensive to get AYSTM certification. Graston is much less expensive. There are many more Graston practitioners out there. But again, beware, many of them cater to a younger athletic population and can tend to be aggressive, so if you find one, be sure to ask a lot of questions about their technique and about their experience with AF. You can google AYSTM and find their website and down at the bottom is a link for finding certified practitioners. You can do the same for Graston. The last “brand” I want to tell you about is more of what I would call a homemade brand. It is not well-known. It is a physical therapist out in CA who specializes in treating scar tissue and he calls his “brand” ASTR. He has a YouTube channel with hundreds of treatments of actual patients with various diagnoses and you can get an idea of what IASTM is and how it is done. His name is Joseph Jacobs and you can do a search for him on YouTube. One treatment I found impressive is called “5 months of frozen shoulder”. The ROM gained with one treatment is impressive to me. All this said, I am not a certified IASTM practitioner. I have a colleague treating a patient with an arthrofibrotic knee and was looking for the article I have attached below to send her when I discovered this blog and decided to just post this information in the hope that it may be helpful to some of you.
Blessings,
Lisa Milstead

In July 2017, I fell “up” some stairs, jamming my forearm into the stair rise. I had excruciating pain in my right shoulder and it was difficult to lift my arm for a week. Then, lying on the bed, I could not lift my arm at all. MRI showed the rotator cuff completely torn off. Surgery seemed to go fine with a reattachment. But, my scapula was winging out severely. I was religious with my PT and the therapist even taped it down. It didn’t hold it down, popped right back up. The orthopedist said it was due to arthrofibrosis. In addition, my range of motion with my shoulder was low. So 5 months later I undergo surgery for breaking up the scar tissue. I was told that my shoulder would be yanked every which way to release the tension. In the process of this type procedure, which is very aggressive, the surgeon shredded my bicep! (My bicep was fine during the first surgery of my shoulder). So I awoke finding out that he had done a bicep tendonesis, cutting and tacking my bicep on the shoulder.
My range of motion in my shoulder is better but behind my back is low, stuck. I have a quirky motion when I use my right hand to point and my teres major is extremely taunt. In certain positions when I sleep, my ring finger goes to sleep. AND, the scapula is worse! It will not flattened. I have tried deep tissue massage, cupping, exercises and chiropractic help. My bicep is tight and feels like plastic.
My frustrations include all of the aching pain and the orthopedist saying there is no scapula surgery that has been found to correct the winging. Possibly, in the arthrofibrosis release surgery, did tendons get twisted out of position causing the scapula to wing, the teres to tighten and some nerve damage??? Has anyone else experienced this? Thanks for reading-

Hi everyone,
My story is the same as others, mine dates back to 2016 & “life changing” is an understatement. I am in Australia. I have read every study and any info available & asked many questions as well & now being on my third surgeon. I have a couple of questions that do not seem to be able to be answered even though I think they are simple. 1. Has anyone gone from minimal flexion to 100 degrees after treatment & what was that treatment.
2. The “handful” of surgeons specialising in Arthrofibrosis, what are the specialising in? As all I find is studies & reports but no conclusion, this makes “me” a specialist in this field. I am so frustrated as everyone else is on here & my heart aches reading your stories even though I am in the same position. Wishing you all a good day.

You should go to the website nature.com and type in Arthrofibrosis. An extensive new study with several hundred references was published in January 2019 and released on the web in March 2019. I’ve had numerous surgeries and have progressively gotten worse. It appears that they’re doing studies on this condition but don’t really have a treatment or cure. The specialist out there aren’t really specialists as they want to do more surgeries, which often makes the problem worse. Good luck! I posted this information in May in an article I placed on this site. I feel like I could now be a specialist about this condition/disease.

Hi Kieron. I know this is way out there since it is November 2019. But I had no where to go to answer my questions and consider myself an expert(my ortho actually said I know more than he does!!). I had a simple MCL sprain but think I developed scar tissue that froze it in about a 2-5 degree from extension in Dec. 2018. Had decent ROM until I tried PT for it and started losing ROM along with major pain. AN MRI confirmed nothing but healed MCL. I was diagnosed with ARthrofibrosis and frozen knee. My frozen knee was at 8-85 degrees. So I left it alone and rested iced and did not much and in June it started to thaw and I am now at 2-127+ ROM. I think that I still have scarring that hurts when I try to stretch into 0 degree extension or try to get back hyper-extension or even try to exercise. But too much of that puts me back in such pain and swelling I am limping again. I am afraid the scar is still active even though my phase of frozen is thawing…The pt and surgeon think I should be back to normal soon. I am not convinced. I am seeking out someone in January, new insurance. Although I have very good ROM,I still have lots of pain. I expect a surgeon would only work on me if I have less ROM, which is why I was dismissed from his practice. I need to find someone too. Have you had any luck?

I had a tkr back in February 2017 and I was never right after it. I Never recovered properly and was left with a very stiff knee – my rom would have been 15 to 75 on a good day. My surgeon performed 2 MUA’s over the following months before agreeing that the knee needed to be redone. I had a revision surgery in February 2018 by a different surgeon and whilst it’s a little bit better it’s still a long way from right. My rom now is about 10 to 85 unassisted. Life is very hard, walking is extremely difficult and whilst I try to be positive most of the time there are days when it’s very depressing. I was only 52 having the first surgery so quite young really. My physio is great but within one day of treatment the whole thing stiffens up again. I’m living in Ireland and I’m wondering if anyone on here knows (and would recommend) a surgeon here who treats arthrofibrosis.

Hi Everyone- I am new to this condition after a lateral bucket handle meniscus repair. I am in SO much pain and PT has made some progress but not very much. I have limited range of motion- less than 90 degrees. Im so swollen and spend my life in pain meds of the couch with ice. Just doing basic activities exhausts me and leaves me in so much pain. I am getting worried about work as I’ve been off since February. I can’t afford to continue this way. Just wondering how you manage to work through the pain and/or what did you do to continue your life. This has been such a difficult process and I’m really getting worried that I am going to stay this way. Thank you ahead of time!

I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.

I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.

I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.

I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!

Reply

mike stanton says:

June 8, 2017 at 10:31 am

Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .

Reply

C.Arthur says:

September 4, 2017 at 6:32 pm

Mike

First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.

If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!

I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.

In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.

Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!

Reply

C.Arthur says:

September 4, 2017 at 6:55 pm

Mike,

I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!

I’ve had a total of six surgical procedures on my left knee after ACL Reconstruction. My initial surgery was almost 3 years ago. My flexion and extension have never returned to anywhere near normal! I walk with a limp and have developed a bad bunion and had to have a strayer procedure (where they partially cut thru your Achilles Tendon). I’ve had physical therapy after each surgery (without much, if any improvement) and my numbers are 70 and 30. I live with constant pain! I did find a new study with supporting evidence that helps me understand this condition. It’s located on the website nature.com. Type in Arthrofibrosis in the search area and a see an excellent study on this condition/disease that was released on 3-26-19. This article explains that those with ACL Reconstruction have up to a 30% chance of developing this condition/disease. Everyone should read this before having a ACL Reconstruction. I was told that I’d be back to my normal life within 6 months after my initial surgery. Instead, my life has drastically changed! I wish I hadn’t had the surgery!

I had a total knee replacement Nov2017. I kept telling the Drs. about this extremely hard marble shaped scar tissue substance sometimes small and getting inside the knee. Sometimes preventing any movement at times, very little movement. Sometimes large and attached to portals. Most times the small ones gather along the incision. I had to have revision surgery March 13 2019. Having same problem. Four Drs. None with any knowledge of this type substance. I have Parkinson’s they want to blame that. My neurologist completely denies that as Parkinson’s related.

I had my right knee replacement surgery back on December 5, 2018. From day one after the surgery, PT, Bending, ROM, & Pain were problems for me. My surgeon ordered an MUA for my knee on January 14, 2019. Fast forward to today where my ROM is 85, and my extension is 12.My poor knee simply does not bend properly or extend properly. My 2nd opinion Orthopedic Dr I saw last week indicated that I have Arthrofibrosis of my knee. He indicated that going to PT was no longer necessary as my ROM would probably be like this for the rest of my life.
So my knee is constantly swollen and warm. I have literally lived on my reclining sofa since the knee replacement surgery. If I am not constantly elevating, resting, and icing my knee I am screwed. I am only 61 years old, and the reality that my mobility will probably be very poor for the rest of my life is very disturbing.

My mother is suffering through arthrofibrosis 9 weeks post op for TKR and it is limiting her flexion range. She is 79 years old, has now had one manipulation treatment, and now is having daily PT with extraordinary pain.
Does anyone have a recommendation for a PT that has a high level of experience with this condition in the Detroit area?
Please help, her spirits are being affected pretty severely. Any other advice is welcomed.

Google Dr. Eric Topol. He’s a cardiologist who had this same problem until he finally met a physiotherapist who knew about this condition and was able to treat it successfully. I don’t know where they’re based but perhaps it’s a start.

is there anyone in arizona that specializes in Arthrofibrosis? I had TKR on both knees back in 2011 and 2012, then an illeotibeal repair that caused an infection in my left knee.. after an enclosed wound pump and 3 infections, and another surgery the infection finally went away. that left me with my left knee without PT for a long time. any pt i had didnt help, without insurance now for all these years.. my leg will not straighten, now my back hurts so bad after standing less than 5 min. my legs get so stiff when i sit for to long or stand im so scared i wont be able to work much longer if i dont get help.. i have heard manipulation can actually do more harm this far down the road.. does anyone know anyone in arizona that knows about this arthrofibrosis, i live in a small town and have read that if i do more PT now.. it better be with someone who deal with Arthrofibrosis or your just in for alot of pain.. hopeing someone will comment.. and have some hope for me..

Hi, I just posted about my experience with this condition/disease. Please go to the website nature.com. Type on the word Arthrofibrosis. A new study was released in March of this year that has helped me understand this condition. It’s very extensive (24 pages) with tons of supporting documents.

Hello Everyone. Here is my story. I’m a 50yo male. My problems all started back in 1984 when I tore my left ACL in High School Football.

11/30/2007 on Thanksgiving weekend while standing on a ladder putting up Christmas decorations I fell off the ladder. I then tore the same ACL and had to have ACL replacement surgery. After that surgery I had the range of motion but was in constant pain and never able to walk up steps or run correctly again.

04/17/2008 I had to go back into surgery to have the plastic screw removed that was used in the ACL reconstruction surgery removed. My leg got infected and I had a drain in my knee for 3 months.

Things went downhill between 2008 thru 2015 and I ended up having to have a TKR on 10/15/2015. The surgery went well but I was experiencing severe pain and I was only able to get 65 degrees of motion.

I had a MUA on 12/01/2015. They were able to get 137 degrees out of the knee. I started PT 2 days after and was able to get 90 degrees to start. Then I went and was working with a different lady 4 days after my MUA and things went really bad. As she was forcefully stretching my knee. A loud pop was heard. She stopped and let go of my leg. My knee swelled up to the size of a football and severe pain set in. I couldn’t get past 30 degrees of total motion and was unable to bend or straighten my leg.

I had another MUA on 03/01/2016. Again, they got 137 degrees out of it. They even showed me pics of my knee bent and my heal touching my butt. Still no luck with getting past 30-35 degrees of total motion. They got me a JAS EZ flex on brace. I still can’t get past 35 degrees total range of motion.

In 06/30/2017 I went in and the surgeon did a MUA & Arthroscopy on the knee to remove scar tissue. I started PT a few days later. Still no improvement.

In 09/17/2017 my Doctor finally told me there was nothing else he could do and washed his hands of me.

April 2018, I ended up tearing the meniscus in my right knee from the severe limp I developed from favoring my right leg. I also started having severe back pain and left hip pain.

Here it is March 2019 and the knee is no better. I still need Arthroscopy on my right knee. I had a new Doctor ready to do both knees, but he ended up loosing his medical license do to a kickback scam he got involved with.

I can’t walk upstairs, ride a bike, run, sit in a chair correctly of even sleep comfortably. The quality of life sucks. I’ve been so depressed. I regret doing the TKR.

Can anyone or does anyone know of an Arthrofibrosis specialist or a good Orthopedic Surgeon in the Central Florida (Orlando) area…Any help will be a lifesaver. As of right now I’ve lost all confidence in the Florida medical system. Thanks everyone.

I had a TKR Nov 2017. Then a manipulation in March 2018. Then a revision in April of 2018. During the revision he replaced the original prosthesis with a smaller ones cap. I also was told the prosthesis was lodged stuck in my knee cap when they reopened my knee for the revision. During all this time I had been undergoing very aggressive physical therapy;pushing down on the knee, bending the knee, then multiple other exercises I performed in outpatient therapy and everyday home therapy. After all this aggressive therapy I cannot bend my knee completely. I walk with a limp. I still do my exercises at home everyday. I just stopped using the Dynasplint 2 days ago at the permission from my surgeon. I had been using it nightly for 5 months. Yesterday my surgeon said I had scar tissue still and that is the problem but he felt I was improving, hence is the reason I was to return the Dynasplint. Is there a point where no amount of therapy will get rid of the scar tissue?

This might help some of you suffering. I had a TKR about 2 years ago.
Complications after surgery — I could not bend my knee. Then x 3 manipulations over the course of 7 months. I still could not walk or bend my knee. During this time — I was going to PT. Nothing they did
helped my situation. I changed to a new a new PT center. A lady there had treated patients with arthrophibrosis. What could I lose — might as well give it a go — I was at the end of the line!!

She made me lay down on a table — she then wrapped my leg with heavy heated wraps. My legs were extending slightly off the table. She then tied on a 5 lb ankle weight. I would then have to lay on the table for 30 minute increments. By the time 30 minutes was up — I was screaming
in pain. I would then rest for 10 minutes. I would then repeate a 30 minute session. She was streching my knee not forefully bending it. I started to improve rapidly. Within three weeks — she had me walking much better.I hope this helps — pls give it a try.

Thank you for sharing your experience. Can you tell us if you were lying on your back, and were your knees totally dropped off table like at 90 degrees flexion, then weighted?
Trying to get a visual…
I’ll try anything- my rom has been destroyed by an mpfl graft, and arthrofibrosis afterward- and my yoga practice with it.

I’m interested in all of your details also. I will ask my PT to reproduce the technique. What were your original numbers? Final flexion? Does the stretching last? My experience is that whatever I earn in therapy is lost as soon as I walk out the door. Thank you.

My doctor never told me this was the issue with my knees. I am 48 years old and trying to still work but cannot sit or stand for long periods due to my back and now both knees. I have lost a lot of my ROM and I cannot straighten either leg with my right leg being the worst. Am I ruined for life with my legs? Both legs are completely bent with R knee being worse. I am finding it harder and harder to walk. I have been going to Dr.’s since a back and knee (shredded L ACL) injury in 2003.

Just had my right knee revision surgery done for the second time after a failure of the tkr components. Have always developed arthrofibrosis after these surgeries and now my big question is, should I go really hard with physio, to the point of tears, to keep breaking through scar tissue or go at rehab easily so as not to keep tearing scar tissue. I am going at it as hard as I can right now, three weeks post surgery but keep hearing different things from different doctors and different physios. What is the opinion of anyone who has beaten this terrible affliction. It means everything to me to try and beat this and really hope I’m going in the right direction.

Look into the x10 therapy
My husband is having same problem, one year post surgery. We did not use x10 due to our location. Would Definitely suggest you try it if possible. Read testimonies
Keep up your spirit of hope

Hi Bob:
I had TKR in my left knee on March 28, 2018. Arthrofibrosis set in around 3+ weeks later limiting ROM. About 16 weeks later my doctor performed the Manipulation.
Went to PT the same day of MUA to start exercises, however, knee still remained swollen from scar tissue, stiff and painful and ROM settled in again at 85-90 degree bend and could not walk without pain, stiffness and limping.

I had reached my insurance maxium for PT and because the therapist could not document any improvements, insurance would no longer allow me to continue on their dime.

I found another therapist (which I paid out of pocket) just to massage and stretch the knee 3 times a week for three months, then 2 times a week for two more month.
Plus therapist gave me exercises to do at home which I faithfully did. I also purchased a recumbent exercise bike.

No, or very little, results for the first two months and then I started walking better and eventually waking without limping. The walking took away the pain in my back and made me want to get out more which helped strengthen the knee muscles.

Eventually, in my 10th month post surgery, I was not only able to walk without a limp (still some stiffness though) and begain to walk down the stairs properly. I am still goig to PT for the stretching and still doing my home exercises in my 11th month post surgery. The scar tissue is still limiting but am happy for the slight improvement, slow as it is. The pain is gone, stiffness has decreased, movement has increased.
I might still be able to gain a few more degrees without having the scar tissues cut out.

So my advise is to get seek counsel from a PT on the best exercises to strengthen the knee, do the exercises and continue on the bike daily. Get out and concentrate on walking properly (heel, toe, bend ankle) through the pain and stiffness and see where you are a year post surgery. Please don’t give up.
Fran

Hi is there anyone in Australia with any expertise, especially Western Australia. I was so active and competing and now nothing. Only one surgeon out of 26 diagnosed this condition and he offered no hope.

I had a TKR on my right knee in October 2016. I was never told that there could be a possibility of the procedure going wrong.

Instead, I was told my life style would be so much better because I had suffered from osteoarthritis in both knees for so long.

Since then I went through rehab after the surgery, physical therapy, water therapy, 2 manipulations, much pain and suffering, and three Orthopedic Surgeons, two, that did not want to touch my knee.

Along with this, I had planned a move to another Georgia, in January 2017, and when I landed at the airport, my Primary Care doctor called telling me of the results of my mammogram, part of my physical check up before I left, and that it was abnormal.

We were looking for a possible Lymphoma, since my Lymph nodes were swollen, underarm and groin area. Needless to say I was shocked and totally disappointed.

This resulted in a return to the Boston area, additional biopsy surgery on the largest groin node. It was benign.

Following up, the inflammation level in my system was very high causing the lymph nodes to respond. The OS said it was not infection, just inflammation, argumentatively.

He did a manipulation, I left Boston, and still dealing with this condition.

I am writing to say I had sent for and received my medical record, and find that he had written in a final diagnosis on the manipulation form after the procedure, Arthrofibrosis.

He never discussed this with me, or suggested any further treatment or any doctor who could care for me after my move. Why??

My knee is bent, painful and still has inflammation, that he said would go away. I was left in the dark,until I found this site to inform me about this condition.

I will seek out a doctor on the list, in my state of Georgia.

But, I do feel that my original OS abandoned me, and maltreated me when he did not inform me of his diagnosis, or suggest where to go if he was not expert in this area. Also, what was he basis for his diagnosis before, and after his manipulation, when there was no scoping of the knee or examination, by him.

Is this malpractice??? What can I do other than seek out an expert in my state? I do understand there is one on the list.

I would just like to use this opportunity to share a positive little story with people out there suffering from arthrofibrosis:)

I remember when I got my knee atrhrofibros diagnosis after an ACL replacement surgery some years ago, I searched the internet for all the information I could get. Among all academic litterature I found, I couldn´t stop myself from also reading about peoples personal stories. And then I got really sad and scared. It seemed to me there was overwhelming stories with “bad endings”- people with endless pain, wheel chair and bad lives. I sat down and cried and promised myself to do all I could not to end up like that. I was 30 years old and way too young to loose one leg.

I followed a heavy physiotherapy program immediately after a “clean up” surgery, and yes -it was a lot of pain and hard work. But I knew that if I did everything right I would give my body the best chances to recover. It took loooong time and I have no idea of how many hours with painful mobilizing and tiring muscle exercises I have been through, and still have to do a little bit.

BUT: after 5 years I am now able to have a complete and great life with lots of activity!!! I am an active dancer, sailor, runner, hiker and climber. My knee has full extention and almost full flexion. I still have some very mild pain, but it is maybe a total of 3-4 days every year- almost nothing. And almost never any swelling or heat in the joint.

I now understand how extremely important it is not to give up and get depressed. I believe there are lots of successful stories out there, but these people doesn´t take their time to share their stories on a page like this. Instead of digging yourself into this sadness for too long- be constructive and read and learn a lot- and practice what you learn. Keep in mind that you can not recover from this illness without doing a lot of physiotherapy. You have to take it serious, be strong, patient and never ever give up!! I got a lot of inspiration from Heidi- “injuried athletes toolbox” from whom I found good and positive advices in my situation. Highly recommend!

Stay positive, and do everything you can to make the best out of you situation! It is possible to get better and even become completely healthy:) 🙂 🙂 And best off all, you learn to appreciate everything else in this life that is worth being thankful for.

Thank you , I needed a story with a great outcome. I have had issues since my initial ACL repair in February . I am making very slow gains, and I feel very down . I’m 43 with three kids and I can’t give up , but some days it seems like I’ll always be like this. I hope my story is like yours, sincerely ,
Nikki Sullivan

I had a RTKR on 4/20/18. Within 4-5 weeks I started losing mobility when extending the knee after I had been seated. I had a distinct clunk, and severe pain and crepitus. My OS originally blew me off, then wanted to do an open surgery. I refused, and had an arthroscopic lysis of adhesions. Knee is hot and painful, with radiating pain. Quads are trash. Knee is hot, sensitive and stiff I can’t drive Any distances. What next? I need to get on with my life

I had basically the same thing happen. After the lysis he got 95 degrees on the table. Not much! After that I used CPM and did only slow slow gentle stretches. Plus lots of icing. It took about a month before I passed 90 degree bend. Read Dirk Kokmeyer’s article on recovering from arthrofibrosis. You have to actually minimize PT initially because the inflammation is associated with arthrofibrosis.

I fractured my left knee tibia plateau on 02/04/2018 and went for surgery on 9th Feb. It was an arthroscopic partial open surgery. I started PT on 20th Feb and doing continuous PT (3 times a week) since then and got around 90 degree active flexion with extension around 3-5 degree. My Dr says I developed arthrofibrosis.

– I saw 3 different doctors in the Seattle area and they all have different opinion. Doctor who did the surgery seems convervative and suggest to continue with the PT – Second doctor says to immediately go for MUA while 3rd doctor says to wait for another month and then possibly go for MUA along with arthroscopic removal of scar.

Now I’m completely confused. Any suggestion as what to do?

– Any recommendation for doctors who have experience of treating ‘fractured knee arthrofibrosis’ in Seattle or WA area?

I’m in pain and very frustrated – request you to kindly advice on my condition.

Hi there,
I have had an ACL graft and meniscus repair then a second meniscus surgery. I have now been diagnosed with a small fat pad impingement and Arthrofibrosis on the lateral side of my right knee (surgery leg). I don’t really know what to do, I have done a lot of physiotherapy and feel like it is not working. Has anyone got any advice on how to improve the outcome of this injury, does massage help break down the tissue?

Hi, am 36 year old male based in Singapore who underwent left ACL reconstruction surgery. 15 months post-operation, my knee flexion is only 100 degrees and extension +7 degrees. I saw two OS and they both believe I have arthrofibrosis. However after doing research especially on this thread I am convinced I need to see a knee arthofibrosis specialist. Any recommendations of specialists here in Singapore? Please help I am desperate.

I was just told I have AF but don’t remember me injuring my shoulder nor did I have surgery. My symptoms started off with my bicep area hurting (was told by first doc that I had bicep tendonitis) .. when it didn’t get any better went for PT was told it was rotator cuff … got mri was told I had AF. Don’t know anyone who has this but is it common to get shooting horrific pain when you move your arm in a certain location? There is a constant throb but if I move a certain way it practically drops me to me knees . Starting PT in a few days but so nervous it’s not going to help

I had a knee replacement in October ’17. With therapy made slow progress with flex, but not with extension. In January, had “manipulation”, then continued therapy with no improvement. Was told that genetic tendency to scarring could not be helped with continued therapy and to expect total of 18 months for improvement.

I have not been able to find anyone in Hawaii with arthrofibrosis treatment experience. Is there anyone in Hawaii or near west coast that can help?

This is Mona. I had AF since my TKR surgery in December 2016, 3 more surgeries then. To be very open I doubt you will find anyone with experience treating AF, there is no treatment per ce, you just need to start trying multiple things. This is the list of items I have tried so far:
1- Cortisone injections (they give you temporary pain relief for 1-2 months)
2- Graston therapy using densed stainless steel tools. I got the tools myself on Ebay and watched a YouTube video then asked my PT guy to learn. This method helps soften the hard tissue, you can do it yourself once or twice a day
3- DO NOT stop stretching and flexing your knee exercises, don’t get discouraged

I am a 54 year old woman from the UK who has participated in sport most of my life. Thirty years ago I snapped my cruciate ligament whilst playing ladies football, I had a number arthroscopies before I had an ACL reconstruction in 1991. My knee never fully recovered and I stopped playing contact sports. In 2010 my knee was deteriorating and I went back to see my specialist who told me I needed a knee replacement but as I was in my mid 40s I was told I was too young to have this procedure. In January 2017 I was finally admitted to have my knee replacement as I was struggling to walk and the pain was awful. I was told that it would take 12 weeks for me to recover. Over the next few weeks I struggled to bend and straighten my leg. I was at the physiotherapist twice a week and things were getting no better. I was re admitted to hospital in May 2017 for manipulation under anaesthetic, unfortunately this didn’t really help. When I went back to see my specialists he said there was nothing more they could do for me and I left feeling devastated as I was still using crutches to get around. I spent a fortune hiring a CPM machine to help me try to bend and my knee but nothing changed. My physio told me to see another surgeon in Manchester (about an hours drive away) who took me under his wing. He did an exploratory operation in December and said the arthrofibrosis I had was very severe so I decided to let him remove the knee replacement fitted in January 2017,cut away the arthrofibrosis and re fit a new knee replacement. This will be happening on June 5th, in just over 2 weeks time. I have basically spent 16 months on my back, off work on the sick, cannot sit up for long as my knee swells badly, can’t walk far on my crutches as again my knee swells. I am praying that this operation works and the arthrofibrosis doesn’t return but I am sceptical. I have read lots of forums and haven’t really come across anyone who has had this ailment who are now arthrofibrosis free and living an active life. I will keep you updated with my progress…

god bless you wendy skerritt I am pulling for you. I feel your pain and aggravation. at 58 I had my first surgery in 1981. many, many more since.
however the pain however the range of movement we must move forward and live. i live a full life working raising kids and dogs all that. i have learend to deal with my adversity the beat I can without going insane. I have partitioned my brain to run the fibrosis portion in the background. silently yet always present. as stated before every step accounted for every movement meant to protect myself from falling or otherwise creating more injury. I wish this never happened I cannot go back in time. I trudge forward thinking of others who depend on me and I smile thru it. best of luck and I do understand all of you here.
mike

There are doctors using an experimental drug that slows down fibrosis at the Steadman clinic in Vail COlorado. their names are listed on this website. It is used to slow kidney disease as well. Should be taken a week or 2 before surgery and 4-6 wks afterward. Has shown great promise.
Also patella mobilization in all directions 4 X daily to keep patella from adhering by sterile gloved hands. And flexión but not too vigorously. Need a good PT twice daily. Patient also twice daily. Infection prevention is imperative. Keep everything sterile. Infection means hardware must be removed. Antibiotic IV for months. Replacement of hardware. So be vigilant! Buy sterile bandages and gloves. Big web retailer a source. Best of luck!

Hi Wendy, your story is uncannily similar to mine, hiring of CPM machine and all…
I’m also from the UK and was 54 when I had TKR on my right knee at the end of Feb this year, I then developed AF about 7 weeks in. It took a few more months of me saying over and over again that something was wrong before my consultant sat up and took notice and diagnose me. Since then I’ve had 2 MUA’s and also scar tissue removal all to little effect.
I spent 6 months off work so far between procedures, I’m still on double crutches and debilitated by this condition but I’m back at work part-time but it’s a struggle so I’m doing my best to get on with my life and adapt.
My main reason for replying to you was to see whether you had the surgery to cut away the arthrofibrosis and fit a new knee?

Anyone out there develop arthrofibrosis after only having an arthroscopic procedure? I can only find info about developing arthrofibrosis after a TKR or other “open” surgery. I’m 35 and developed pretty severe arthrofibrosis in Aug 2017 after what was a very simple procedure. I’ve since undergone a lysis of adhesions in Oct 2017 and a MUA with a BMAC injection in Feb 2018. I have been doing PT at least 3 days a week since the first surgery. My Dr has ruled out infection, autoimmune disease, tumor, and CRPS. I have stretches of time where I make good progress, only to stall out a few weeks later. I’m just curious as to what could have caused me to develop arthrofibrosis and if there are others out there with a similar situation?

mike s says to Kortney:
Kortney this is a comment I left Feb 5th to Alvin.
Like I mentioned some of us are just predisposed to this monster.
mike

February 5, 2018 at 12:13 am

Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.

I have developed Arthrofibrosis after a second knee replacement. I was told I would never walk the same again. This happened in 2014. I have learned to deal with it because I was told another surgery will not guarantee improvement and after 2 surgery’s and an manipulation I just did not want to go through it again. I have started working out and my knee is stronger. Stray strong and try to do what’s for you mentally and physically. Wishing you the best of luck

I also developed AF through a simple scope. Had a manipulation and scar tissue removal scope. All of this within 8 weeks. Still struggling to achieve extension. Currently at -4. Flexion is great. I am determined to fight this and get back to my life!

I am 9 months, post-op, bilateral TKR. Was diagnosed with Arthrofibrosis. Had an MUA Dec 21st. I am SO miserable, frustrated and hopeless that I just don’t know where to turn. The pain is crazy! Even 10-20 minutes of “life” (standing, walking, moving) is too much! We’ve done every test possible, tried more modalities than can be listed…NOTHING helps!

I read these posts and just get more hopeless. I was hoping scar removal would help, but the posts have me scared of that. Cortisone injections don’t seem to provide relief. Has anyone found anything that helps at all?

I have a condition that has been described as Arthrofibrosis of my ankle following to an injury to and surgery on my deltoid ligament. I have looked through your abstracts and the articles you reference on your website and you have many interesting articles regarding knee arthrofibrosis. I could not, however find any information about the ankle. Do you have any references hints or ideas that may be helpful, particularly pertaining to rehabilitation procedures and techniques please?

After my lst knee replacement, horrific pain, unable to get good range of motion, very swollen, hot knee, I was diagnosed with CRPS (RSD). I didn’t believe I had that condition, and didn’t want to believe it. Just last week, (almost 6 years post lst replacement, (2 revisions, 3 scar tissue removals, and 3 MUA’s,), I have very uncomfortable itching/burning/stabbing sensation on both elbows,especially when I lean my elbow on a hard surface. I’m thinking it could be CRPS. So now with the Arthrofibrosis, should I cancel my Open Lysis surgery on that same knee. I have 24/7 pain, inability to walk correctly, stand, bend, etc. etc. In the near future I need back surgery. The back surgeon said it would be beneficial if my knee was more stable in order to handle post surgical back rehabilitation. Do I not get another knee surgery? I’m very concerned that I might make the CRPS symptoms worsen. Yet, I want/need to not have the pain/discomfort and limited ability to enjoy life. Any opinions. My knee surgery is scheduled for the end of June, only because I’m a teacher. I want my life back. Between my huge, warm, stiff knee and the severe Sciatica going down the other leg, groin, and butt, I’m a physical, and emotional mess.

You definitely sound like you have crps. My neurologist who specialises in crps told me that surgery can aggravate the crps but if your pain is already that bad and the surgery can help with your mechanical issues then go ahead with it. Each case is different. But my crps pain is horrible I get it 24/7 most of the time at a 10. My ortho had a surgery that he said would help with one of my mechanical issues so I had it done, I did have a horrible 2 months but it helped with some of my mechanical pains so it made it worth it. At the end of the day it’s down to what you feel is right, will the surgery help improve pain or movement? Movement helps crps and when you have multiple issues you need to deal with them one at a time.

I should clarify the crps pains are still there whether they are worse after the surgery is hard to tell because crps is hard to understand even when you have it. All I know is I don’t have a pulling pain where my patella Baja is because I have a plate there now, but I do have pain from the plate instead. You will find it hard to find a doctor who will operate on your limb if you are diagnosed with crps I saw doctors for a second opinion and most of them said they wouldn’t because of my crps. Even after already having had surgery on my knee I’m in a similar position to you not knowing whether I should have another surgery on my knee due to the crps, it is very frustrating. Sorry if that is no help at all.

Yeah at the moment I am tossing up between amputation and fusion but half of my doctors agree with amputation the others don’t. I do think quality of life wise amputation is the way to go but I think I just want to take it one step at a time if that makes sense

I was injured in December 2014, I was since diagnosed with arthrofibrosis, complex regional pain syndrome and patella Baja. I have between 0-20 degrees range of motion but my leg is always kept out straight as any movement causes me pain. I am unable to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. The complex regional pain syndrome causes my knee to interpret everything as painful. The patella Baja was a contracted tendon that pulls my knee cap down I had a tibial shift last year to try help with that. I’m taking medication for the CRPS as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 time I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a knee fusion to try and get out of the wheelchair and do more with my life. I had a brace made up but due to the crps I couldn’t tolerate it it was one that went from mid shin to mid thigh, my orthopaedic surgeon wanted me to get a full leg one but the place wouldn’t make it. Has anyone had any experience with a knee fusion? has it helped?

This is my second post, wanted to share some information maybe it will help some AF sufferers. I had my TKR in December 2016, was doing very well post surgery with daily PT, within 6 weeks I started feeling pain, swelling and stiffness, with reduced ROM. Has manual manipulation, two arthroscopic surgeries since, last surgery was December 2017. Tried experimental medications, PT, and everything else anyone can imagine. Still the hard scare tissues kept coming back and spreading to encapsulate my knees and spreading to my legs and thighs.

I heard that cortisone injections may help so went for it four weeks ago. This is the best I have felt since the original TKR surgery. I feel the cortisone injection to the knee, is helping to break the scare tissues, I constantly feel cracking in the scare tissue layer covering the knee. This coupled with ‘deep tissue mobilization” therapy by my “hero” therapist, who started also to use “Gratson” tools(look for it on YouTube).
All of the above is helping, My ROM is improving, I can for the first time in months without the help of a cane, pain is minimum and I am very encouraged. I wanted to share my experience with everyone, hoping that this may help others going through what I have gone through struggling to fight this stubborn scare tissue build up.

Graston tools are medical tools, made of high density steel, my therapist use it to break hard tissue and “mobilize” it so it is not “glued” to tissues, muscles and my knee cap. There is a video on YouTube you can ask your therapist to watch and try it on you with the tools. Good luck everyone

I had a Partial onmLeft 9/13, then converted to total 9/15. Persistent swelling, warm to touch etc. had to have ankle surgery on the same leg and my podiatrist offered MLS Laser after the ankle surgery. Best recovery I’ve ever had. I’m now doing 10 sessions on my knee and the swelling, pain etc is extremely improved. Another surgery is not an option. I paid out of pocket for the laser therapy but it’s completely worth the price!!!!

Hello I had my first TKR on my right knee January 8th of this year and already had to have a MUA on March 5th. My knee will not straighten and will not bend properly without excruciating pain. My PT spoke with my surgeon and he tells her that MENTALLY I am blocking progress! I am in PT five days s week and do my home exercises yet my ROM seems to be stalling.

Nicci, I have had arthrofibrosis for decades and, on more occasions than I care to remember, was told “It would bend if you wanted it to” by both surgeons and PT’s who know absolutely nothing about arthrofibrosis. If you have a knee full of scar tissue there is no way on God’s green earth that it will bend, regardless of what they do, and they more they try to force it the more inflammation, tearing and bleeding they will cause which exacerbates the problem. My current rheumatologist had a very accurate description of a knee with AF. He said “it is as if your knee is internally casted in cement”. While you may have apprehension because of the pain, if you have AF it’s not going to behave like they think it should.

no , it is definitely not in your mind. I had a left a left TKR in 2007 and due to the extraordinary pain and the overhealing I have been left with a stable, but limited rom knee. i had the knee manipulation 6 weeks following surgery. i have less than 90 degrees of motion and find it difficult to stand up. I was told by an orthopedic surgeon years later that the pain was thought to be from RSD and it happens in 30 % of knee replacements. I have gone to therapy on a regular basis for years. The problem now is what am i going to do about my right knee which needs surgery?

My lst TKR (2011) left me with severe Arthrofibrosis. Had 2 revisions, and 3 scar tissue removal surgeries/(open lysis of adhesions,)…and NONE were successful in reducing the swelling and the pain in my knee, and leg. (I went to Chicago for one surgery, Dr. Finn-specialist in the field, spent 2 months there, and still no success) Dr. Mayman in NYC is doing a trial study using an amniotic patch to try to prevent scare tissue from growing back. Had that surgery last summer, but unfortunately my body produced an opening in my knee area, however NOT THE SURGICAL SITE, that kept bleeding, had 2 ER visits, and was forced to stop my PT program for awhile. I am planning to have this surgery again, BUT, should I? After 6 surgeries, should I bother to try again? Has my knee told me that there is no hope? Should I just give up? I ‘m in pain every day, all day for going on 6 1/2 years. My quality of life/activity/happiness, has diminished. I’d like to be active and happy again. I know there are no guarantees, and the choice is all mine. I’m not concerned about the surgery. However it’s 2-3 months of PT and healing AGAIN! If you’ve had similar, any thoughts, please let me know.

Hi my name is Russ, I’m 55 years old. I had my first total knee replacement in January 2016, went through hell with it, had a manipulation a few months later, then had it scoped, never got better, finally found out I got Arthrofibrosis. After still fighting with the terrible pain and swelling I went to Doctor in Colorado, he found out The first knee replacement the doctor put in was too big and had the bottom part in crooked too boot. He advised a total knee revision. I just had a total knee revision in Dec 2017, still terrible pain & swelling, they had me come back in for a Knee manipulation in Feb 2017, the dang pain is worse now than it was. Getting very discouraged and down. The doctor now wants to put me in a knee felxation splint, has anyone tried one ? It just sounds to me like a lot of pain and not sure what it is going to do about the Arthrofibrosis !!

I was recently diagnosed with arthrofibrosis of the elbow joint. Almost a year ago I took a good fall and shattered by radial head and tore three ligaments in my elbow joint. I underwent radial head replacement where I received a prosthetic radial head. I had two additional surgeries to get my lengths (radial head that is) correct. Now sitting here a year later, my surgeon says I have excessive scarring and possibly small bone fragments possibly around my elbow joint. I’m awaiting my referral to another surgeon who has agreed to take me on and do an open surgery release of my elbow joint and hopefully get some mobility back.

As for pain its up and down…some days its awful and some days it is there, but tolerable. I have very little flexion and mobility in my elbow joint and can’t rotate my wrist and have trouble with mobility in my hand. Oh–I’m right handed and this is my right elbow. I often have pain not only in my elbow joint, but also in my forearm and shoulder.

I’m hoping my new specialist can help me. Can anyone tell me what to expect and what some options are for me. Thanks!

I have been living with arthrofibrosis since my right knee replacement in 2015. Last spring I received Physical Therapy for Graston Technique and though it improved my ROM, I still do not have full knee flexion and extension. Because of compensating for the lack of range in my knee, I now am dealing with ano achillies tendonitis.

I now have to have my other knee replaced and have partnered with my physician on a care plan to try to have a better outcome. I am still concerned about how the right knee will impact my left knee replacement recovery. If this is similar to your journey, do you have any Suggestions?

I have posted before. Is there anyone out there with knowledge of someone in Scotland who deals with Arthofibrosis. All the comments seem to come from America. I am due to have a revision of TKR and I am dreading it. I had aggressive therapy after my original TKR. My knee was like a balloon about to burst and I was always in excruciating pain. I have had the same pain from day one of my op and have always been of the opinion that something is not quite right apart from scar tissue that I think I obviously now have. I did everything that was asked of me regarding physiotherapyand I was always worse off. Can any professional in Scotland advise whether I should go ahead with the revision. I have been told that there are no guarantees. I just want to be able to bend my knee without pain so that I can sit in a chair comfortably.

I had a TKR January 2016 and 6 months later I had an MUA because I could not bend my knee, consultant got my bend to only 90 Degrees. After aggressive physiotherapy and excruciating pain,my therapist would not treat me any more because it was just causing more pain. I bought an exercise bike and persevered in terrible pain. The day after exercising I always felt worse and the bend in my knee was just not happening. Consultant said that I had Arthofibrosis and as there was not a lot known about this he couldn’t help me and sent me for a second opinion. Second Consultant is willing to do a revision of my TKR (with no guarantee of success), and replace the prosthesis with a hinged joint which he says works better for patients who have a revision. I had a guarantee date of 23rd January 2018 (today) for my operation only to be informed that my Consultant’s waiting list is 26 weeks. I am now at the end of my tether. I walk with a limp and I can not sit comfortably in a chair unless my leg is raised. Is there anyone who can give me advice on pain therapy.

I had similar experience after my December 2016 TKR. I since had two manual manipulation and othroscopic surgeries, only to have the scar tissues come back again. I did metal allergy blood test which showed I am not allergic, even with severe case of hard tissues build up after all four surgeries. My advice is to re-evaluate the revision surgery and whether you will really not go through the same issue of scare tissue build up, there is no guarantee unless you do the metal allergy test first to make sure that your have allergy to a metal implant, and that a revision surgery will not just add more complications without solving the scar tissues build up problem. I also found out that using anti-inflammation cream Diclofinac Sodium cream helps a lot with the pain. My therapist is also using Graston technique and tools, which are helping a lot. Good luck.

I was originally diagnosed with osteonecrosis which led me to having tkr. I am now worried in case more of my bone is dying, 2years later. I just do not know what to do for the best. I am on no medication as nothing works, I just have to suffer the pain. X-rays do not show anything wrong and I have never been offered an MRI. Does anyone have an opinion.

Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.

I have had the same pain from day 1 of my TKR. Original consultant says I have Arthofibrosis. How can that be right from day one of my op. 2nd opinion Consultant doesn’t know why I am in pain and cannot bend my knee but did not mention Arthofibrosis. I do not know who to believe and am dreading having a revision in case I end up worse. I can not travel in a bus, train or plane as I can only keep my leg elevated without pain.
I live in Scotland and wish I had the money to go somewhere else for a true opinion

Yes, I have developed AF after TKR Aug 2017. I am having difficulty finding help in the Seattle area. I want to know which specialist will treat AF after TKR. I am 55 and want my life back! Please someone advise….

I am in Seattle as well, had AF after a December 2016 TKR surgery. I tried so many different techniques and medications, in addition to 3 manual manipulation and arthroscopic surgeries. Feel free to call me, I can provide details on my experience as I am doing tons of online research and working with two different surgeons and a pain management specialist in addition to a very experienced physical therapist.

I had TKR 30 months ago with limited ROM after (<90 degrees), had MUA six months later during which the surgeon claimed they got to 115 degrees.
But the very next day was back to less than 90 so I strongly suspect Arthrofibrosis although no one will specifically diagnose it as such.
Intensive physio (I have a high pain threshold) did nothing and I am now wondering if this in fact aggravated the condition.
Belatedly I am now looking for other non surgical options, would enjoy discussing with you.

ok I just have to ask this question as simple as it may seem I need to understand at what level of fibrous you folks are dealing with? now to clarify my query a bit let me explain briefly were I am at with this vile disorder. then feel free to chime in.
the fibrosis in might right knee is thick and unyielding.
it is to the extent that it has pulled my knee cap downwards.
i can only bend my knee 20 degrees.
the fibrosis inside and thruought my quad muscle has migrated up past my turniquite line. this condition hurts more than my knee at any given moment. the quad muscle affected by the fibroius is as hard as steel and non elastic. when touched it feels like pressing on the bark of a tree.
so as stated i am just curious as to the extent of your fibrosis and the amount you are dealing with.

Hi,I might have a tad more range of motion than you, but your symptoms & mine seem quite similar.
Chronic pain, physically disabled, no quality of life. My first knee replacement was 6/2011( previous to that I had a bad surgeon/bad surgery 1981, then 3 scare tissue removals after that). Since my 6/2011, i’ve had 5 more surgeries. 2 revisions 3 open lysis or arthroscopic scar tissue removal, and the last in 6/17 open lysis and placement of patch containing amniotic fluid-good research being done with that, but my body decided to bleed from a small area not in the incision, and because of that I had to stop PT for awhile, which of course stopped my ability to ward off aggressive build up of scar tissue. I also had 3 MUA’s. I would/will do ANYTHING that could/would help my horrific condition. I hate being in constant pain, and worry about when I’m old (I’m 62 now, lst knee surgery 37 years ago) Except for the horrible doctor I was recommended to for my lst knee replacement, Ive gone to TOP QUALITY DOCTORS, local, nyc, and also spent 2 months in Chicago under Dr. Finn’s care. There doesn’t seem to be any answers for tough cases like mine. So upsetting and frustrating. I use to be active, sports, etc. worked out 3 – 4 times a week. Now between my knee and a severe back condition which is somewhat related to my knee, I can’t exercise at all. If you hear of ANYTHING that might help us, please let me know. (I go through surgery fine, I’m up and walking, (of course w/ some pain), but able to do PT, highly motivated, and a very conscientious/involved PT patient. Then at 2 WEEKS! , my body has developed that horrific scar tissue, and I can’t break through…..there has to be a cure!!!!

the only treatment that has been offered is to have the appliance remove and a mechanical or hinged knee put in its place. a radiation treatment may be applied to thwart off fresh scar tissue locally however the problem that remains is the fibrous that has turned my quad into a non elastic muscle will not flex and allow extension of the leg. that is the big picture.

Hi Mike, I have been dealing with atthrofibrosis for almost 5 months. I broke my patella in half with the top half lodged in my upper thigh (Quad) on September 1, 2017. I had surgery on September 7. I had a cast for almost 5 weeks, did not know at that time ithat I had AF. I worked hard from October 10th, with no progress. I could only bend 20 degrees or so. I had a manipulation on December 4th. I wish I had not done that, because the AF started growing with a vengeance. My body considered it ANOTHER trama. It was frozen straight I could not move it at all. I also felt my thigh had hardened it felt like a manikin. It was AF. Went back to my Dr. and realized from the manipulation that I had AF. So I went back in on December 14 and he removed so much scar tissue he literally had to pull it with his hands to get it from my thigh as he did not want to make the new incision up into my thigh as I would need to be in a cast again. So after that surgery I went home was put immediately in a CPM machine 24/7 I eat sleep and live in this machine. I have just purchased one. I have been renting one. I also iced and elevated my leg frequently. I went to physical therapy twice and realized it did more harm than good at that time. So my Dr. and I decided to back off and to start 800 mg. Ibuprofen daily. No physical therapy for 3 weeks and continue my CPM 24/7 stopping only to use the bathroom. I just went back Monday and I measured 65-70 degrees and on my CPM I am doing 82 as I type which translates to be the 65-70 degrees!! I was elated. I know I have long way to go , but I am hopeful that I can get past this unbelievably bad situation and get my life back!!!!! I hope to give you some hope as well and you are not using a CPM you need to. My leg would be frozen straight if I didn’t have it.

great news from you! I’m beyond the machine. I too fell and broke my knee cap 5 months after the replacement surgery I don’t have to tell you how much fun that was. came out of a 3 month cast at 0 deg. at about 20 today. as I type this the af in my knee has pulled my repaired cap downwards towards my tibia and it feels as if the shin bone has been hit with a hammer all day long. I have a pending visit to the u of m medical center as it will be my last ditch effort then maybe removal they can have the damn leg.

I’m in the same situation I have between 0-20 range of motion but my leg is always kept out straight as any movement causes me pain. I am in able to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. I also have a condition called complex regional pain syndrome which causes my knee to interpret everything as painful. I had patella Baja (a pulled knee cap) but I had a tibial shift last year to try help with that.

I also have a complex region pain syndrome so I’m taking medication for that as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a fusion to try and get out of the wheelchair and do more with my life.

Hi, I’m wondering how many people with AF are on disability insurance of some kind? I’ve been dealing with it for 10 years, trying to run restaurants for a few of those years, and it just gets harder and harder to do the things (stand, sit, bend, lift, etc.) that you need to do to work full time.

I had (L) total knee replacement Dec. 5, 2016. I finished PT and was doing great. I started feeling movement in the affected knee at that time, without pain. As the weeks went on, pain began, increasing in intensity quickly. Six months later (June 5, 2017) another surgery due to excruciating knee pain. My Orthopaedic Surgeon (Dr. Raymond Wolfe, Premier Orthopaedics, Glen Mills, PA Phone: 610-876-0347) performed another surgery and discovered a rare arthrofibrosis the size of a baseball between the patella and tib/fib. I am reaching out to this Foundation for help. Are you familiar with this rare condition?

Hello, Fellow Sufferers,
I would be grateful to hear from anyone who has any information about or experience with amniotic membrane treatment
for post TKR arthrofibrosis. This new procedure is being done at HSS in New York and maybe other places as well. Please let me know if you have any information. Thanks.
Ann H.

I had the amniotic patch surgery done last summer. I truly believed and hoped that was the answer. Unfortunately for me, my body destroyed my chance to see if the amniotic patch would work. My knee started to bleed out from a tiny spot that had nothing to do with the surgical incision. It didn’t stop bleeding for a long while, so the dr. had to tell me to stop PT. That was the end for me. I think you should try it! Dr. Mayman is an excellent, kind, compassionate dr. I hope to re -do the surgery again. Unfortunately I have to deal with a serious spinal disk problem lst. Good Luck to you. If you have any other questions pls. ask. I also went to Dr. Henry Finn in Chicago. Heard he was the best in the Arthrofibrosis field. Unfortunately I’m pretty sure I needed a MUA at 2 weeks but, Dr. Finn disagreed. Spent 2 months in Chicago, and returned home worse than when I left. My leg from upper thigh to ankle is now swollen, rather than just the knee area. I refuse to give up. So, if you hear of any new ideas, please share them!

Dear LL,
I see that you recommend Dr. Mayman at HSS very highly. I have been trying to get a consultation with him for quite a while but I understand he does not accept medicare anymore and it is illegal for him to accept out of pocket payment from someone who has medicare coverage. Would you be able to tell me on what terms you got to him? Were you part of the pilot study with some special arrangement? I would be grateful for any information. Thank you.

Dear LL,
I posted a reply to your recommendation of Dr. Mayman at HSS,but so far I did not hear from you regarding how you were able to get to him as he no longer accepts medicare. Perhaps you prefer communicating wit me privately via e-mail. My address isheilbrun5@aol.com. Would very much appreciate hearing from you.
Thanks.
AnnHeilbrun

I developed arthrofibrosis after both my knee replacements. Felt like rubber bands closing around my knees. My flexibility went from 115° to 80° in my first replacement. Crippling horrendous pain especially at night. A scope was performed and it was manipulated back to a 115. No pain, no heat developing at night. Then did my 2nd knee replacement. Both knees and were now tightening and my mobility was lessening. Horrible chronic pain especially at night. Then someone recommended the Graston Technique. I go to a physical therapist that specializes in it. It has changed my life. I’ve gotten my mobility back, I can go up and down stairs normally, I have minimal pain and have my life back. If you have the same problem I highly recommend you look into this. It could change your life.

Thanks for sharing your story. I am going through similar situation where I developed fibrosis following TKR, it has been over 7 months since my surgery, I have bad pain sitting or standing, my ROM is very limited ( 15 – 75), I do messages constantly, went through many months of TP with no difference. I wanted to learn more about the Graston techniques you have mentioned. Is this for breaking the scar tissues, or just giving them more flexibility to improve ROM, is this technique painful,..etc. Appreciate more details please. I went through manual manipulation surgery, as well as Arthroscopic surgery, in both cases I feel better just for a few days, one week max, then the scare tissues start forming again, and limiting my mobility, so looking for any treatment that does not break the tissues, rather work on making tem more flexible.

I saw your question and apologize for taking so long. Graston technique absolutely changed my quality of life. I go to a PT that specializes in it. You need one that has the graston technique tools. I have also learned to do some things at home that help with it. Arthrofibrosis to me felt like rubber bands getting Tighter and Tighter around my knees. My Mobility lessened and lessened. Woke nightly with hot knees. Just kept getting worse. Graston technique at the beginning is painful but it is so uplifting when you get home and feel that your pain is starting to go away and your Mobility is returning. The process basically breaks up your fibrosis that hasn’t grown normally. The therapy feels like little rubber bands snapping inside sure leg. As it goes on the treatments are less painful. I truly looked forward to them because the next day I knew I’d feel better. Google it so you can see how it works with the utensils. Find a physical therapist that specializes in it and get started. Your life will change.

After years of doctors and unsuccessful surgeries and debilitating pain for a right knee contracture (frozen), I just recently was diagnosed with arthrofibrosis. My journey finally led me to Dr. Noyes in Cincinnati Ohio. What an incredible surgeon and authority in this specialty. Unfortunately, my situation is too severe for successful intervention to restore the back of my knee so I could straighten in. However, there is some possibility of an extensive surgery to possibly gain some flexion. The surgery would be opening up my entire front of the knee and removing the scar tissue that has completely encasulized my knee. It would be a long risky surgery with a 50/50 chance of working. I am joining the blog to get some feedback from anyone who has pursued surgery at this severe level. Thank you for listening.

I am turning 65 next month and have had four knee surgeries on my left knee over the course of seven years. The first, 2009, was to replace my left knee. The second, a year late, was an exploratory operation because my knee was sore and my surgeon said I have an infection. When I came our of the anesthesia he told he did not see anything and sewed me up. I under went a series of heavy antibiotics (delivered IV style). After that surgery the original surgeon passed away suddenly and I had no referral to anyone for two years. I was now required to use two canes to walk at this point.

Fortunately, a doctor friend referred to another surgeon. I saw him and he said that the infected prosthesis needed to be removed and a temporary spacer needs to be put in. Just before this surgery the infection was so bad it erupted through the skin and my doctor said that I might have to have my leg amputated. That did not happened.

I underwent the surgery with the prosthesis being removed and a spacer installed for one year. My left leg was placed in a brace and that is how I functioned for one year to make sure the infection was gone. I needed my wife’s aid to dress, bathe, go to the toilet, and could not drive or cook. I was now confined to using a walker.

One year later I underwent the fourth surgery to remove the spacer (which had cracked) and install a new prosthesis. When this was completed I was told there was much scar tissue due to the previous surgeries and that I would have limited motion but at least I still had my leg. Now the walker would have to be permanent. I now have minimal movement, severe pain if I try and flex my knee, a badly swollen thigh above the knee, numb spots on the knee, and it is impossible for me to stand with my left foot flat on the ground. After the surgery my heal was pulled up so that when I stand only the balls under the toes touch the ground. I have had to have orthopedic shoes made for me to try and walk.

One last item. Due to the fact the my gait was affected by use of canes so long I have had to have my left hip replaced. I am know able to drive, but need help throughout the day with common actions. If there is some way to minimize the arthrofibrosis and provide some flexibility I would jump at the chance. I have given up on a cure and only dream of my once normal life.

Have been dealing with severe scar tissue in ankle joint for two years now. Had one surgery for debridement of the sinus tarsi canal, which left me with even more scar tissue and in even worse condition then before. I have tried chiropractic care, myofascial massage, several rounds of PT and needleing….nothing has helped. Has anyone tried PRP treatments or stem cell treatments for arthrofibrosis? Does anyone know a physician in Atlanta area who deals with arthrofibrosis? Thanks!

i developed arthrofibrosis after surgery for an acl and meniscal tear. I had to have two surgeries, including a lateral release to make my knee somewhat functional. I also developed patella Alta due to the scar tissue pulling my knee cap lower. This was about 15 years ago. I’ve had pain in the joint ever since which I’ve dealt with by icing and nonprescription and prescription pain killers. Over the last few years, the pain has gotten really bad. I can no longer walk very far, and the muscles around my knee have atrophied. Weight bearing exercise on the leg is painful. My question is, would a person like me even be a candidate for knee replacement? I’m 50 years old, and used to be a very active person. I ran, practiced taekwondo (where I tore the acl) and liked to swim. I regularly weight trained to keep my muscles strong. I just doesn’t want a doctor operating on me if I’ll develop scar tissue again. My orthopedic surgeon says that it shouldn’t happen again, but I’m not too sure.

I am 49 and just had total knee replacements on both knees at the same time on May 9th, 2017. I now have the arthrofibrosis in my right knee and can not bend it but about 60 degrees. I have had manipulation under ansetisia done twice since the replacements, and still not better. My Ortho Surgeon informed me today he is leaving me be for 3 more months and then will see if I am any better. If not we will discuss my 2 options he says I have. One being, total replacement on right knee all over again and 2 being that I live the way I am at that time.

Hi, I just thought I’d share my story about arthrofibrosis. Mine developed in the knee following a riding accident, in which I had the terrible triad, torn acl, torn lateral meniscus (which healed on its own) partially torn lcl, and a dislocated kneecap. I developed stiffness immediately post injury but I suspect this was due to blood in the joint, I was placed in a knee immobilzer and had surgery for a internal derangement, after which surgeon told me I had a “severe injury” but had several small adhesions the beginning of arthrofibrosis) in the knee which were lysed and there my journey begins… This surgeon noted the acl was held together by just a couple of fibers and did not stitch the stumps together as is common practice. He then basically told me to go to the city for further treatment, he missed the patella dislocation, I found a “sports medicine” doctor who did 2 scopes but basically did nothing, and even lied to me about his findings, my knee had locked into a bent position, I did PT but nothing changed no matter how aggressive they were at PT the knee remained locked. I was young and naive but one day got the brain wave to check my medical records, the surgeon told me he could straighten my knee in the OR, the residents dictating the reports said differently, then this doctor recommended an acl reconstruction, something told me not to do it, why make a stiff knee stiffer, So I went to the library read every sports medicine book I could get my hands on, and learned as much as I could interesting in that no one ever mentioned the term arthrofibrosis to me. Through one of the sports medicine books I found a local doctor who diagnosed me in 5 minutes, planned a surgery, kept me in the hospital in a CPM, ordered very aggressive PT basically starting in the recovery room. He also discovered my kneecap was dislocated and fixed, he kept a super close eye on me and my progress, and we were able to get my knee back to a normal rom for my knee, one year after that surgery he did the acl reconstruction and removed a “huge” amount of scar tissue, and again very aggressive PT. This all happened in the early 1990’s and was a 3 year process with 5 surgeries that was depressing, frustrating, and at times had me questioning whether I was crazy. Fast forward to 2017, and I have pain in the knee again, went back to my doctor who just retired from surgery and discovered 2 meniscal tears, had surgery 6 wks ago, again had a ton of scar tissue but the graft is tight and fine, and again struggling with extension and flexion, PT I am currently seeing is not very aggressive. Doctor just wrote a note telling them to be aggressive. But, my knee help pretty well for 20+ years, Current surgeon is knowledgeable about arthrofibrosis, Basically my point of writing this is to offer hope, don’t take one doctors word at face value, research, read, find the best you can. I went through three years of hell, and had a pretty normal knee that got back to about 85-90% of what it had been. Had I listened to that second doctor who knows where I’d be. I’m sorry to read some of the stories here, but for those whose journey is just beginning fight hard! It is possible to get back to normal and even after my 6th surgery on that knee I have every intention of getting my knee back to where it should be (no pun inteneded). I wish you all the best, and hope for the best outcomes for you.

One other thing I want to say here–if I hear one more professional, doc or PT, or family member that tries to imply or out and out say that this was caused by my not doing something or not doing it “right” or “enough” I think I will throttle them on the spot. I have worked my a$$ off diligently for over a year on PT there and at home. I have undergone five (5) procedures in that year, one was the initial replacement, and fourth was the revision, which replaced that. Others were two Arthroscopies with MUA, and an MUA. Countless hours of PT, CPM,, Dynasplint for extension, Dynasplint for flexion, Game Ready Ice machine ($120/week, not covered). I’ve missed six months of work during this time, and the reduced hours will affect the pension I receive when I have to retire in 15 months (the earliest date I may do so). I’ve endured pain that made three childbirths (one with back labor) look like a walk in the park. I’m still struggling with it, but I work at it every single day. I want my life back.
So if you are a professional or family member, try not to victim blame or suggest things you have no idea or in case of family, any authority to suggest whatsoever. We’ve got enough to deal with, without having you imply or say straight out that we somehow caused this dreadful complication, as if anyone would. Just don’t. Be supportive. Rant over. And yes, that did make me feel better.

Amen to all that you said! My husband has been dealing with this since January, 2015. He has had knee replacement, two arthroscopies with MUAs, dynasplint, CPM, PT (both at facility and at home). He has been very diligent. Was forced back to work on a less than 100 bend and now just being told that he will probably never be medically cured and the State is giving him hard time to collect permanent disability. We are fortunate to have a doctor that does not blame him, but I know that not all are like that. This is a serious condition and needs attention. And, you are right, the rant does make you feel better. Good luck.

Is there a chance to claim permanent disability? I ‘ve had 10 knee surgeries since 1981…5 since 2011. I had to be out of work 7 months in 2015. Since then I’m back to work, although had to change my position. However everyday it is difficult for me to get through the day at work. I’m a teacher. Sitting, standing, walking, lying down, are all painful. I keep trying surgery. In addition, PT, acupuncture, Calmare, Graston,Cryotherapy, massage, etc. etc. I’m in as much pain at home as at work. Emotionally it helps to go to work, but some days it’s so difficult to get there. Once I’m there I try not to think about my horrible pain, and permanent disability condition. But once I leave work all my limitations continue. There is another therapy that is the same at Graston. I ‘ve forgotten the name. I went through months of that treatment. Had zero improvement. Went to another PT, he did one session of Graston, and my knee got worse. Felt really bad, and look like I had an infection. Went to emergency room. No infection. Just the Arthrofibrosis issue flaring up from the agreessive Graston tool. Any suggestions accepted. Thx!

I have the same problem with people who think they have the solution to get my leg to bend.some saying doing too much while others say not enough.BS,I have been dealing with stiff leg for 11 years still will not bend.I went through numerous procedures and seen different doctors.The main answer from the doctors is nothing can be done. So I hope someday something can be done but as of now nothing.In the end i had two hip replacements and several surgeries and procedures done but no luck yet with arthrofibrosis on right knee.So move on and hopefully some day we have a solution.I was 46 years old when it began!!

Go see Dr. Henry Finn in Chicago. I just got back. I had 0 degrees of flexion in my right leg and have arthrofibrosis. It too hadn’t bent in 12 years. But, with Dr. Finn’s expertise, I now can bend it just shy of 70 degrees. An extremely complicated surgery and lots of PT, but my quality of life is slowly coming back. We stayed in Chicago for 8 weeks so I could have PT every day. I am now back home in Washington undergoing another 8 weeks of PT. It will be worth in the end. A lot of hard work, but so worth it. He radiates the knee prior to surgery to prevent the cells from growing adhesions so fast. I couldn’t find another surgeon that would work on me.

Everyone is different. He was able to help me, but you will need to consult with him to see if he can help you too. He sees people from all over the world. He is extremely knowledgeable and so efficient. Check into it. He works out of Weiss Memorial Hospital in Chicago.

I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.

I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.

I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.

I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!

Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .

First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.

If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!

I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.

In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.

Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!

I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!

Cameron, you nailed it! Everything!! This is the toughest thing I’ve had to deal with in my life and I’ve been dealing with AF after a TKR for 10 years. I’ve had multiple surgeries to take out the scar tissue (open and scope) and MUA’s, but it just comes back even worse than before. I’ll be 50 very soon and I really don’t know what to do anymore. I guess all we can do is live one day at a time, like you said, but those days are getting tougher!!

Mike, I don’t know how you do it with no meds. That would make it even tougher for sure!! I feel for you!!

Hang in there everybody!! We’re a small group, but we’re a strong group!!!

Thank you for the nice comments as I responded to Mike and told him that I was afraid to come back and read any responses to my ranting that night! LOL. I’m just glad to know that many others understand that level of pain, frustration, etc. A lot of times you feel alone and to be able to turn to this website and know that you aren’t is very comforting in and of itself and HELPS me stay positive to work hard in order to protect my hips, good knee, and rest of the body that suffers because of this one badly.

Like I told Mike, just being able to have an appointment with a premier Surgeon out at Steadman Hawkins in two weeks and having a pain management doctor that is on board and a partner, helps so much! When you feel like you are proactive in this it does help to some degree at least for me. You still have the day-to-day struggles but at least something to work toward.

Anyway, like you, I couldn’t believe that someone can do it without medication! That is so strong. I know the struggles of medication and it’s side The facts versus dealing with the pain bite self and they’re both problematic. Anyway kudos to him and others that can do that but at this point I’m just not one of them LOL!

Once again good luck and stay strong to you and all the others that suffer from this disease! I’ll keep you posted on my situation and I hope you and others get some relief in the future. 🙂

It is becoming harder to ignore the pain. As my body reacts to the inefficiencies of the damaged leg other areas become inflamed. My hips for instance the right socket is telling me the gait is off don’t do that. my left foot underneath has become bunched up were the toes start as if I am walking on a big stone. Walking still doing that. I am an engineer by trade. I average 4,000 to 6,000 steps a day on concrete at work 5 days a week. Each one accounted for each one anticipated. I fell October 3 my foot only clears the ground by a few inches as I walk. Got it caught on something on my face I went. I have to push thru it my family depends on me. If only the scar tissue had not invaded my thigh. Move forward never go back…mike

Thanks for all the supportive responses. Cameron, you really nailed it. Luckily for me, after the first 3 procedures, when I had a hooked leg with terrible lack of flexion, I researched and found Dr. David Mayman at Hospital for Special Surgery. Also, he recommended, and I highly agree–with going to Hospital for Special Surgery for the PT in such a case. These people are top-notch, and mostly deal with difficult cases like ours. They have much more in their bag of tricks than the standard ROM exercises. They work as a team with Dr. Mayman, and even though I am still struggling against the scar tissue, no one is giving up on my. My team is there, by phone, email and in person. I am no longer in the excruciating pain I was experiencing last year this time. Since the replacement was replaced, I am dealing with stiffness, tightness and swelling, but nothing like the constant and overwhelming pain.

I also have had water therapy, and once I had that–I joined my local YMCA and go 3-4 times per week and do a series of exercises in the water 10 reps of each. It helps a great deal.

I refuse to give up. Dr. Mayman’s PA told me I am already a success story based on the condition I came to them in, and I know it’s true. My kids were so amazed that right after surgery I could stand up straight and walk that they were snapchatting little videos of me doing it!

There is hope. Never give up. Don’t accept lackluster or wishy washy PT. You NEED someone who really knows about arthrofibrosis.

Thank you Patricia! Like I told Rick and Mike, I cringed at even coming back to read responses to my ranting at night but I’m glad you guys didn’t totally think it was crazy. LOL.

This website provides a great outlet for learning, sharing, and what I consider some of the best basic therapy from others that have experienced this nightmare firsthand!!

I am excited to go see Dr. LaPrade at Steadman Hawkins if for nothing else, maybe some closure or a plan for the future. Also like I said to Rick and Mike I found a good caring and understanding pay management doctor that is working with me to explore other options as we all know as a group they are very slim especially with the chronic regional pain syndrome as well. I tried the new DRG stimulation where they temporarily implant electrodes in your back and use gentle Stimulation of that nerve canal at L2 and L3 in the vertebrae just like they do nerve blocks but it didn’t seem to be that effective for my pain. Hopefully that’s the new future for others though. Tomorrow I am going to try ketamine infusion in a series of six to see if that will help with the pain but research has shown that it is at least hopefully effective with mood, depression, etc.

I will keep you guys posted on my journey as we all know it is a long and arduous and please let me know how you guys are doing as well. 🙂

I have had two total knee replacements on my right knee, four manipulations and over six months of physical therapy and to this date, I have 0 degrees of flexion from arthrofibrosis. I am currently in Chicago preparing to have surgery on April 11, 2017 by Dr. Henry Finn. He designed a prosthetic called the Finn Knee that he will be using to replace my current prosthetic. What is different-I will undergo radiation treatment to help prevent scar tissue from growing so prolificly in order for me to actually make headway in Physical Therapy and the success rate of this particular prosthetic. Read the following article:

Does anyone have a Flexinator that they are no longer using? I would like to buy it from you ASAP. Please let me know at dbairdscott@gmail.com.

1) Finn Knee System Recognized as Notable Orthopedic Innovation
Published on November 24, 2008
The Finn Knee System, an orthopedic prosthesis that debuted in 1991 for limb salvage and difficult knee surgeries, was recently acknowledged by the American Academy of Orthopaedic Surgeons (AAOS), Rosemont, Ill, as one of the more notable orthopedic innovations of the 1990s.

Henry Finn, MD, chief of orthopedic surgery at Weiss Memorial Hospital, Chicago, medical director of the University of Chicago Bone and Joint Replacement Center at Weiss, and professor of surgery at University of Chicago, designed the implant.

The system is highlighted in the October issue of AAOS Now, which chronicles orthopedic achievement in the 1990s—a decade marked by rapidly advancing technology. The record is part of the AAOS’ 75th Anniversary Celebration, which looks at more than 1,500 events in the 75-year history of orthopedics.

According to the maker of the implant, Biomet Inc, more than 12,000 patients in the United States have benefited from the System and what it evolved into in 2000—the OSS Orthopaedic Salvage System featuring the Finn Knee, a complete salvage revision/oncology limb-reconstructive system.

Finn says it treats people with extensive bone and ligament damage as a result of deformity, trauma, revision, infection, or cancer, which conventional knee replacement would not be able to accomplish.

The Finn Knee was also recognized as one of the most significant advancements in the field of orthopedics in the last century in the millennium edition of Orthopedics Today (January 2000).

Finn has helped invent other orthopedic prostheses: the Balance Hip, a cementless hip replacement that enables patients immediate weight-bearing on the hip; the Vanguard SSK Knee, a super-stabilized knee used in complicated and revisional knee surgeries; the Balance Microplasty Hip, used in minimally invasive surgery; and the OSS Salvage Cage, used for revisions in cases of catastrophic failure of hip-replacement sockets..

I just tried the DRG (. Dorsal Root ganglia) stimulator that Saint Jude’s provides to the pain management doctor to implant. I did the trial period of one week just a couple weeks ago with the temporary implant. So what they did was they went in like they would with an epidural injection with a hollow tube needle and inserted two leads in your back. One of the leads goes to the L3 that covers the knee and the L2 that it’s just above the knee. You then control the power and stimulation with a handheld transmitter or you can turn it up or down. You try that for three days to seven days and if you see over 50% reduction in pain then you can elect to have it permanently implanted with a small battery and the wires completely encapsulated in your body. You then control it with the same transmitter. They said they were making the batteries and transponder smaller but right now they were still a little larger than what I like. I also began to notice some lower back sciatica pain. I believe the gentle stimulation was overstimulating or exacerbating the muscles above that in my sciatic area and those nerves as well. The sales person now with St. Jude’s were very persistent and I Felt a little pressured and that the risks outweighed the particular rewards at the time for me to have it permanently implanted so I elected to have it removed and my lower back pain went away. They said they could adjust that and I’m sure when it was permanently done it would’ve been better. I did some research on it and was just not quite confident that it was exactly what I needed or wanted at this time until I see the knee surgeon in Colorado. However, I also have chronic regional pain syndrome in my knee that probably contributes to more knee pain and complexity so others may actually benefit more from this procedure than what I did. I just think it’s still very new and wanted to see if the knee surgeon before I committed to anything. It sounds like from the research though the DRG stimulator is much better than prior stimulators in the past or at least the studies have indicated some of those things.

Anyway, I hope this helps you with your research and your decision. My pain management doctor and anesthesiologist was wonderful about removing it and completely understood! He’s going to continue to seek out other treatments that will assist in reducing the pain so I hope you get there as well but having a great pain management doctor will really aid in the process. Good luck!!

I have had three scopes and two knee replacements on my right knee. First a partial, then a TKR. Unfortunately, I have been diagnosed with AF and have had the scarring cut out twice over the last year and a half. This might sound like a very stupid question but here goes. My left knee recently had a scope done on it after I contracted a major infection in the knee capsule, after getting a cortisone shot in that knee. Emergency surgery was performed the night it was discovered and the knee was found to be pretty badly worn out and seems the only answer would be to have another TKR, in my left knee. Is it an automatic that I will get AF in that knee, too? Does anyone know or have gone thru this. Right at the moment I can only climb stairs using my left leg to climb and then pull the right leg up to the same step. Same going down. At least I have a bit of strength in my left leg but don’t have the strength needed for very much in my right and if the AF comes in my left knee I would be useless. Wondering whether I should just grin and bear the tremendous pain in my left knee or chance a TKR where I’ll probably have no strength and tremendous pain to boot. Plus the possibility of being nearly a total cripple. Ain’t AF great!!

my vote if and when my left knee were causing me issues would be to grin and bear it. I can not imagine going thru on the left what I an currently and always will on my right. they are only guessing to say otherwise. read my story here I am currently down to 30 deg extension. I hate how I feel.
Mike Stanton

I had TKR on my left knee Dec 2013 and have had arthrofibrosis ever since. 1st manipulation under anesthesia was performed without improvement. The post open pain from the MUA was incredibly bad. Since then I have had 2 additional surgeries to remove the scar tissue, the most recent Dec 2015, followed by aggressive physical therapy each time but each time the AF returned worse than before. However, I had TKR on my right knee September 2014 with decent success and virtually no AF. My physical therapist said she had seen that, 1 knee bad 1 knee good, many times before. This is just my story. If I had to do it again I would have done more to avoid surgery at all. I am in constant pain from the AF and unable to walk or stand except for brief periods of time. I’ve read about promising work with stem cells to avoid surgery. I would recommend trying anything except surgery.

worst thing in the world, I”VE been dealing with this nightmare for OVER SIX YEARS and NO RELIEF in sight.three manipulations,two scopes and one two hour cleanup surgery.this was done in HSS WHICH IS ONE OF BEST HOSPITALS AROUND.Even drove 11 hours to CINCINNATI to see WORLD RENOWNED DR. NOISE and he would not touch my KNEE. DON”T DO IT

I believe as someone also with AF that you will get it in the other knee too. I am currently recuperating after my 4th surgeryto try and fix this with a left tkr, but even after vigorous physio the barstard is back again! Sorry about the bad word but I feel better swearing about the damn thing. There must be something or someone with an answer for af sufferers cos itsa hideous condition.

I would like to share my experience with arthrofibrosis. Reconstruction surgery in 1978 due to a large osteochondritris desiccant defect of the lateral femoral condyle. Back yard football was the culprit. Knee grew worst over the years. On March 3, 2014 TKR. Three weeks later my ROM was 65 flexion and 5 extension. Three weeks later my knee became stiffer with 60 flexion and 20 extension. A manipulation was performed with full extensions and flexion being obtained. Two weeks after manipulation my ROM was 85 flexion and 20 extension. All this time I have been to physical therapy five days a week. Knee is swelling with plenty of pain. Knee arthroplasty, open capsular release/adhesions and a poly exchange on May 20, 2014 with 3 extension and 125 flexion. Started back physical therapy. Two weeks later, 7 degrees extension and 110 flexion. Two weeks later; 3 of extension and 96 flexion. Went back to work in July using a cane. Walking was painful. My September checkup indicated my ROM was 8-12 extension and 90-95 flexion. By October 2014, I have been to 107 physical therapy visits and have taken 120 prednisone pills. My last visit to the Andrews Sports Medicine and Orthopaedic Center was in January 2015 indicated a ROM of 10 extension and 85 flexion. I became sick and tired of walking with a limp. I called several orthopedic clinics throughout the south trying to find a surgeon with scar tissue experience with no avail. In August 2016, My wife found this website. She read about this disease and cried. I called the Hughston Clinic in Columbus, Georgia and asked for the director of surgery. The administrative clerk said that their was no such director, so I told her my story and that I’m begging for help to walk. She said she would go ask the doctors. She did and called me back saying that I was in luck because the doctors said to see the doctor that fixed Humpty Dumpty. I said thats great, but who is he? She said Dr. Fred Flandry. Two weeks later we went to see him. I asked him if he could help me and he said he could and that it would require severe physical therapy. I was mentally prepared. On the way home, my wife was distraught because she didn’t want to see me in another six months of pain. A few weeks later she went back to this website and found that Dr. Fred Flandry was listed. She began to cry tears of joy. I also joined in. January 4, 2016 I underwent another scar tissue removal, open knee 41 stitches! Forty-three physical therapy visits and ninety at-home self exercising with an hour each morning and two hours every evening, my knee was much much better! I ended up with a 8 extension and 115 flexion. Summary: After two scar tissue full open knee surgeries, 150 physical therapy visits and 90 two-a-day home exercises, I still have to do my exercises three times a week for 30 minutes each to keep my back from hurting. I hope this encourages you. 10/9/2016.

short version…total right knee replacement july 2015. did not work out to well. back to hospital within the first week home. mau then sent to rehabilitation center. entered there with 25 degs. bend. left with 30.
another surgery in august to repair and replace parts. back to hospital after the second day home for removal of a large hematoma in thigh. another mau in august. came out at 90 degs. regressed to 30. leg is becoming harder to bend and the pain throughout thigh and knee are unbearable. fired surgeon in September. new surgeon in October. upon looking at my x-rays determines my femur was notched almost one inch above the appliance. states will have to replace the original parts and place a device up into my femur to bridge the open gap. states it is a fracture point. due to the amount of activity in the past several months tells me to come back in January 2016 to allow things to settle down. at this point he also is concerned with the amount of AF that is starting to take over my thigh up to and including the tourniquet line. the AF is not only on the surface it has infused inside the muscle. extremely painful ordeal. Christmas eve I fell due to my inability to walk without crutches and heard an audible crack.
pain scale now at 10 passed out. was taken to emergency room they found that my patella had cracked in half. surgery January 4th 2016 full cast to groin for three months. after the removal of the cast 0 deg bend. AF has turned my thigh to steel. more pt after several months able to reach 30 degs. nobody has an answer how to fix me. went to Chicago to discuss with Dr. Henry Finn. he suggests replacing the appliance with a hinged knee of his design. however nothing can be done with the amount of AF in my leg. passed on the replacement. as of today I am stuck at 30 degs. the AF in my thigh fells like a charlie horse and if you remember as kids someone giving you a snake bite on your wrist, well mix those two sensations together at a pain scale of about 4 to 5 24/7 that’s me. I have learned a great deal about pain and suffering and the helplessness this disease brings forth. no one knows what to do with me. at 57 its a life changer. no one understands. they see me if you will “walking” and think all is well. considering having the leg removed. I could not make this story up nor would I. if you are experiencing less than me be grateful. I feel compassion for anyone who has more. just thought you should know. mike

Michael: I sympathize with you and I am sorry. Read about my experience “Deanna Baird-Scott” below. In short, I too have 0 degrees of flexion in my right knee after two TKR’s and more physical therapy sessions than any one person can fathom. I live in excruciating pain 24/7’s. The contorted way of getting up as you know does havoc to your hips and back. So, we not only have severe pain daily, but I and I can imagine you too have bursitus in our hips due to having a chronic lump, arthritis in my back and I have fallen more times than I can count. That is only the tip of the iceberg of problems encountered when we have no flexion.

I wanted to tell you to maybe re-consider your decision about having a new knee put in. I too went to Chicago to consult with Dr. Finn. I am having surgery in April to totally replace the prosthetic with his designed prosthetic. He has ordered radiation pre and post surgery to help prevent the rapid growth of adhesions and aggressive physical therapy for approximately 8 weeks. Will most likely have to have more PT when I return to Washington state. I just refuse at the age of 58 to give up the chance of a quality life again. Of course, maybe there are some specifics that I am not aware of that makes us unique in our circumstances so the outcomes may be different causing you to think you have no further path forward. If that is the case, I am truly sorry.

It is March 27, 2017, almost March 28th and I am meeting with the radiation oncologist tomorrow for my radiation markings prior to my lysis and TKR of my right knee by Dr. Henry Finn. My surgery is scheduled for April 11th. As I have mentioned in past posts, I have no flexion at all in my right knee and have suffered with chronic severe pain for ten years. I am sure hoping this will do the trick or I live with this the rest of my life. I am 59 years old. So please keep me in your thoughts. Hope you are all finding solutions to your arthrofibrosis as well. Sincerely, Deanna Baird-Scott

I just found this site yesterday…and even though I am reading horror stories about your circumstances, it does make me feel better knowing there are others out there like me. I haven’t met anyone who has had the issues I have had with my replacement/scar tissue, so I feel like I’ve come to the right place now…with people who truly understand the struggle. I had my replacement 2 1/2 years ago and have had nothing but trouble…like you…a complete life changer. I’ve had an MUA at 9 weeks post op, and a scope to remove scar tissue at 16 months post op, 17 months of PT and I’m worse now that I was at the beginning. Constant pain, swelling, cramping, little sleep, not able to do many of the things I could do before…I’m only 57, but sometimes feel much older and I do worry what the future holds if I’m already in this shape at this young age. Will I even be able to walk at all when I’m older?? Anyway, I just wanted to say hello to a fellow replacement club member and I hope you can find an answer to your knee issues! If you do…please let me know what it is!! Hang in there!!

Julie,
I don’t visit here often so welcome to the club! There are others like you and others that wish they were you. Some one is often not as lucky to be like me and suffers beyond it.
Cant imagine. At 57 I have lost almost all activities I have had the pleasure of doing all my life. Sadly in the quite moments of the night this nightmare haunts me and sorrow sets in.
I wish Deanna would chime back in so I could understand her ordeal as of late.
In her own time perhaps I am not running any where soon….lol
Michael

I am a 19 year old girl and I tore my ACL almost two years ago, I have had five surgeries on my knee and a treatment of radiation. I have arthrofibrosis and I can’t bend my leg past 85 degrees. I am also at a negative 10 degrees in extension. I live in Michigan but I am willing to travel anywhere to try and find a surgeon who can help me. My surgeon is extremely experienced and did a great job with my repair but has never seen a patient with arthrofibrosis and he has no idea what else to do. I can’t stand living like this anymore. I use to be a very active athlete and now I can’t run or do any of the things I used to do anymore. I am in constant pain and I wake up every morning not knowing if I will be able to get out of bed because of how bad my hips hurt. The way I walk has already put a huge toll on them. I am really hoping to find some answers. Please help me if you can. Thank you.

I’m so sorry to hear. I live in California and travel to see Dr. Colin Eakin in Palo Alto. When I first saw him, I was at kind of in the same situation as you. The surgeries and no help. I went to physical therapy 3 x a week and that didn’t help as well. After my first initial surgery with him. I had 125 ROM.

Hi, My name is Jack. I currently live in Chicago and I’ve had 7 surgeries in the last year and a half. I tore my acl playing basketball and used my hamstring to repair it. My range of motion is as follows, Extension 15 degrees and flexion 70 degrees. I’ve had two well recognized surgeons, however I was told recently that my Surgeon has never seen a knee like mines. And he is afraid that I will never be normal again. My scar tissue is excessive and is growing at an alarming rate. Its hard for me to live and I was forced to quit my former job and had to settle for a new one to make ends meet. My goal is to walk normal and possibly run again. Is there anyone with suggestions that could help me progress. I’ve had a CPM, a Game ready machine, therapy 3x a week, but nothing has helped me improve. Before I hurt myself I was running 20 miles a week and squatting 405, now I’m afraid that is all history

My daughter had arthroscopic surgery in 2007 to cut the Plica band that was causing knee pain. She was told it was a simple procedure and she would be back to work in a few weeks ( PNP). After a few week post op…she was not able to straighten her leg enough to put her heel on the ground. She was walking on the ball of her foot. PT was not able to do anything and she was in a great deal of pain when they tried to straighten her leg.
A second option was sought and the doctor confirmed that there was no way her doctor could get her leg straight as she was already suffering from a shrinking patellar tendon. He told us that she would need open knee surgery and that with the fibrosis we would only have one chance to get her leg back. He said most likely her contracture would be permanent.
We had the open knee surgery with the original doctor, and things were good at first …..but then the wound dehisted and infection set in….the doctor seemed to think my daughter was responsible for this.
We sought help at HSS in New York…. 2 doctors trying to straighten her leg were only able to straighten it under anesthesia , but unable to maintain extension and flexion enough to walk heel toe.
Braces and partial knee replacement and a patellar tendon extended with cadaver tendon, have not been able to keep the fibrosis at bay.
I believe now, almost 10 years later that the Achilles’ tendon has shrunk enough to prevent , even with a straight leg, her from putting her heel down to the floor at all.
She is still walking with a brace without her heel touching the ground or bearing weight.
She is now 38 years old, just.
Please give me the name or names of the specialists that might be able to give her her life back.
We live in Connecticut , but will go anywhere that offers hope.
She once walked the floors of Yale’s Pediatric Unit working in pain management. Now she is home on the couch where she manages to find some relief from her own pain. She cannot stand or sit for any great length of time without a great deal of pain.
Please let us know if there is help for her…..she still has a life ahead of her she would like to enjoy again.
Thank you.
Sincerely,
Diane Cooper mother of Allison Cooper

Hi Diane,
I’m sorry to hear about Allison’s situation. I’ve had many complications from a “simple” ankle surgery. I see that you visited HSS. I was recommended to S.Robert Rozbruch there from the Limb Lengthening & Complex Reconstruction Service at HSS. Apologies if this is who you’ve already visited. Also, does your daughter have a pain specialist to help her in the interim and that could work with a specialist when you find someone else? The other specialist who i sought opinion from was Steven Weinfield from Mount Sinai. He’s a foot and ankle surgeon but given the potential involvement of an Achilles contracture for your daughter, it might be worth considering an opinion from a Foot and Ankle specialist.
I wish you all the best in finding a solution for your daughter.
Kind regards,
Nicola

I strongly recommend Dr. Singleton in Fort Worth. I have AF, developed after an infection during a very simple scope 5 years ago.
I have in total had 8 surgeries.
I am having another in 2 weeks. Singletons is doing some amazing things with Lospartan and Stem cell therapy. Also the post-op PT is critical

I Injured my knee on the 26th December 2015 (dislocation with fracture) .
On March 2nd I had a Knee scope done to take out the piece of bone fractured that was keeping my leg from straightening. After alot of PT my range of motion hasn’t changed much at all. 6 months later I see my OS again and now I have arthrofibrosis in my knee. Im scheduled on the 18th August for MUA and another scope surgery.

Im really nervous about the pain afterwards. Has anyone had any success with this similar situation and what is the recovery time?
(I also have sever muscle atrophy as I haven’t been able to straighten my leg since December )

Sorry to hear this hope there has been some improvement. I dislocated my patellar in Oct 16 and couldn’t straighten or bend my leg. 8 weeks later saw the consultant he got me in for arthroscopy at 9 weeks post injury to remove bone fragments and scar tissue. I’m now 3 weeks post op and having physio twice a week but still can’t bend or fully straighten leg and there is very little improvement in movement if any prior to surgery.

I have been searching quite a bit lately for information with respect to arthrofibrosis in the SHOULDER. I have not seen anyone on this site with the issue in the shoulder. I had an accident in December 2014 and landed on my right shoulder. One year and four days later I had a right rotator cuff reconstruction. I worked a very physical job climbing to great heights and carrying a lot of tools and equipment for nine months while waiting for surgery. At the time of the accident I was laid off for several months which allowed me some healing. I have extensive repairs done in the surgery. I am almost eight months into aggressive physical therapy three days a week. I have had two cortisone injections since surgery. No relief from the second, and about two weeks partial relief from the first injection. I have very limited range of motion and a great deal of pain, day and night with the odd short break. My therapists have never seen this condition and although I have faith in my surgeon (he helped me with knee surgery in the past and has an excellent reputation), he seems very concerned with treating or correcting the condition. I have found no information on the condition in the shoulder other than what Wikipedia has to offer. One clinic told me the shoulder is a whole different ball game. I want this over with….successfully. Any input and information would be great appreciated. I am from Ontario, Canada. 44 years old.

I have since had a second surgery (mid September past) to release my capsule and clean up my shoulder to remove the arthrofibrosis. Great first three weeks then pain returned. ROM is great but the aching was pretty bad, and the catching inside my shoulder. At my 8 week appointment I again had cortisone injected. Felt great pain wise for a couple of weeks (still catches tho) and the pain is back again. Can anyone tell me what the joint feels like when the condition returns, please? TIA

I can only speak for knee but it feels as if it is filled with cement. I have virtually no flexion, it is very tight, swells, turns red and purple and is painful. It also feels as if there are octopus tentacles wrapped around my leg from my thigh to my calf.

I could not have described how my knee feels any better. I have been suffering for 7 months and finally someone else has expressed what I feel. I had a knee scope in May and MUA in July. My initial surgery was complicated by reflex inhibition which has caused arthrofibrosis. Thank you for letting me know that I am not alone.
Tami

Thanks. I guess my shoulder now almost feels like its being crushed in a vice. Sore to touch quite often. Also sore in my bicept and back under my shoulder. I am just now sensing that my range is harder to achieve. I am not sure about this road I find myself on.

I’ve had tremendous amounts of scar tissue from AF cut from my knee twice in the last two years. Once by scope and once when about to perform a TKR but when the knee was exposed it was completely encapsulated in scar tissue. I’m now at about 80 degrees of flexion and can only straighten my knee to about twelve degrees from being straight. This same surgeon will not perform an MUA or a scope to cut the tissue as he says, history is on his side, that it will grow right back. I’m on pretty heavy duty opioids and too much Advil just to get through a day. I’m sixty-three years of age and have not tried pot since my youth. Has anyone tried or had any success by using medical marijuana, whether in simply it’s CBD form or it’s THC form. I’m a little reluctant to spend money on this as I don’t have much and I don’t like being high but sometimes it might be worth it for pain relief. So, please let me know if any of you have tried this, with or without success.

Your surgeon is just like the rest of them. They cannot go outside the box. I had a TKR in February of 2014. I have had stiffness and decreased range of motion for 2 1/2 years. I have seen my surgeon from the Rothman group about 10 times more than usual. I have returned to physical therapy and nothing relieves the tightness and stiffness. I am scheduled with Dr. Joseph Farell at Virtua Hospital for arthroscopic surgery for Arthrofibrosis September 14th. It is definitely worth you visiting him. I saw 5 doctors before him, who basically told me, deal with it.

Hi , I hope this helps. I recently had a arthroscopic surgery June 15, 2016. Up until recently I had the stiffness and was feeling so discouraged. From my experience from the past from having this surgery before I realized I waited to long in starting therapy and that caused scar tissue to continue to built up. When I had this surgery before I was in therapy. Within a week each time. Also I was attending a therapy center that had a machine specifically targets the scar tissue and breaks it up and my knees went back to bending fine. Just 2 days ago I had shoulder surgery, and leg cuffs to prevent blood clots were put on each leg. They massage the leg and circulate the blood the whole time during surgery. What I didn’t realize until later on that night is that I was able to bend my knee and was not having the pain that I had been having. Only a little. Nothing like before. I am still amazed and excited and. I was anxious to share this info. I was reading so meany testimonies myself trying to get information concerning my stiffness because I was depressed. It takes some kind of machine to get to that scar tissue surrounding that muscle. No hands on can do that.. No ice pack can do that. That 5 minute machine in the sands point physical therapy place worked for me. And its just so happened that I had to have surgery that they put those cuffs on my legs that gave me some relief. I do hope this helps you Maybe it will help you too.

Do you know if these cuffs for your legs are a standard procedure when getting shoulder surgery? In my case I’m getting an ulnar shortening (osteotomy) surgery near my wrist, in January. If not standard, can you remember, if you know, what the cuffs are actually called and I can check with my surgeon. I will google it, too.

I can’t go to see the doctors everyone recommends because I am a Canadian and our wonderful socialist health care system does not allow for me to travel to the U.S.A. for what they choose to call an elective surgery or any other in all likelihood. I can’t seem to find a doctor in Canada that specifically does work on AF. If I do he/she would probably be booked for years.

In your third last sentence, are you referring to Sand Point, Idaho? That is quite close to me as I live in southern BC. Thanks for your post as it gives me something else to chase in this ongoing search for some long needed relief from AF. I first has a partial knee replacement in 2012 and have been suffering since that time.

Myson had a serious accident and has had two surgeries on his knee and foot. Foot is doing better basically Dr. saying this ROM 40 degrees is the result of scar tissue build up. Maube surgery in a year, maybe not. Not OK. Please can you give us your suggestions for a good followup Dr. and good PT. I am not impressed with Orlin and Cohen or with De. William Schwartz of Massapequa park.

Hi Susan N – Thank you for sharing your story. Would you please post a detailed update on your procedure from Sept 14th with Dr. Farell. Any insight into the recovery would be great as well. My finance has had a rough time dealing with his knee pain. He has had 3 surgeries on the right knee. Surgery one was a TKR; surgery two was a debridment of the scar tissue; surgery three was a TKR revision. He is in chronic pain all the time and I’m searching high and low to find help and relief from all of the scar tissue that has built up. Wishing you much success! Thank you.

I’ve tried it. I don’t like being high either. The benefits are that it helped me relax. Anxiety would calm way down helping leg muscles relax. Less spasms and cramps. Also made me sleepy. All together a much better nights sleep. Do build a tolerance though but changing to a different strain fixes that. Indica with a high thc level is best. If you don’t have to go to work or drive it may help you during the day also. I still work and don’t like being high do I only smoke before going to sleep. I’m told the high feeling wears off with time.

Hi. Im so sorry all of you are going through this. I had an arthroscopy 6 weeks ago for a meniscus tear and debridement, and right now, I’m very sorry I had this done. Although my ROM is 110 flexion, I have alot of knee stiffness and also a very strong pulling sensation in the lower leg connected to my knee. I know this is not normal. My Ortho doesn’t know what to make of the pulling sensation and has just ordered physical therapy for me for 4 weeks. Unfortunately, I was supposed to recieve PT earlier but there was a communication problem between the physical therapy place and the Orthopedic’s office, so I never received any PT for all of this time. My ortho admits that I may have some scar tissue when I brought it up, he just said that it may take a year for it to be resolved and didn’t offer a LOA for the future. He just says I need to strengthen my quads. Excercise seems to make me more inflamed and my knee/leg seems to feel more “hardened” the next day, so I’m trying to be very careful. I still have some swelling , so I’m not sure if the swelling is causing the stiffness or if I have arthofibrosis.
I’ve been very afraid and depressed off and on, since I’m a single woman with no one to depend on financially. I’m trying to be hopefull that I will improve instead of getting worse, but like many of you feel very alone in that I don’t feel my ortho truly knows what’s going on with my knee. He told me that he’s never has to do a MUA for an arthroscopy, so that should tell you how uncommon arthofibrosis is. Anyway, I don’t know if this will help anyone, but I’ve been reading about how the antibiotic Doxycycline has prevented adhesions in animal studies after they received a laminectomy. It was discovered by mistake, but there was a significant reduction in inflammation and TNF. If you Google Doxycycline and scars adhesions, you’ll see the scholarly articles on the experiments that were done. Doxycycline has also apparently helped many people with both osteo and rheumatoid arthritis.
Im wondering if any of the orthopedic Drs. on this list here have considered giving Doxycycline post surgery? I noticed that when I stopped taking Nordco after my surgery, and then started taking Benadryl to help me sleep through the pain, the swelling in my knee looked like it had gone down within the next day, and even more so the following day. I remember that when I took hydrocodone for an apendectomy years ago, I experienced quite a bit of stiffness, so I recently googled hydrocodone and histamine, and several articles stated that opiods cause histamine release in the body. I’ve always felt I had an issue with histamine build up and inflammation for years, and occasionally take Benadryl before I go to bed. I know that excess histamine causes inflammation, and besides the Doxycycline reducing inflammation do to any bacteria in the body , it also reduces histamine. I know there are some side effects to Doxycycline, but Ive decided that if I do need a LOA I would try to get on Doxycycline, take hydrocodone for only for the first few days. Maybe this is wishful thinking, but I do intuitively feel this could be of help to preventing worse scar tissue from coming back.
Anyone have thoughts about this?
Also, Im perplexed at this hardened pulling type feeling that goes from the middle of my knee down my lower leg (somewhat to the right..especially if I do quad excercises ).
It doesn’t happen when I keep my leg straight, but if I try to walk normal, or hang my leg off the bed and raise my leg up slightly, and lower it again, it feels like it is going to break. Anybody else experience this?

Hello Everyone…..I’m a 48yo male. My problems all started back in 1984 when I tore my L/H ACL. I then tore the same ACL back in 2007 and had ACL replacement surgery. After that surgery I had the range of motion but was in constant pain and never able to walk up stairs correctly or run again. Things went down hill and I ended up having to have a TKR on 10/15/2015. The surgery went good but I was experiencing severe pain and I was only able to get 65 degrees of motion. I had a MUA on 12/01/2015. They were able to get 137 degrees out of the knee. After that I could only get 90 on my own. I’m a aircraft mechanic and need my range of motion. I went back to work and things didn’t improve. I had another MUA on 03/01/2016. Again they got 137 degrees out of it. They even showed me pics of my knee bent and my heal touching my butt. Again I haven’t been able to get more then 95 degrees out of it. They got me a JAS EZ flex on brace. I still can’t get past 95 degrees of range of motion. I can’t walk up stairs, ride a bike, run, sit in a chair correctly of even sleep comfortably. I’m now starting to experience hip pain from walking with a limp. The quality of life sucks. I’ve been so depressed. I regret doing this. Can anyone or does anyone know of a Arthofibrois specialist in the Central Florida (Orlando) area…Any help will be a lifesaver….Thanks everyone.

I am almost two weeks out after scar tissue removal/manipulation by Dr Fred Flandry at the Hughston Clinic in Columbus Georgia (actually had the surgery across the river at Phoenix City Alabama in a hospital owned by the Orthopedic surgeons at Hughston Clinic) and I am THRILLED at the difference already in ROM. My ROM was 45 degrees going in and I had been disappointed twice before but I wanted to try one more time. I would highly encourage anyone that has an arthrofibrotic knee to see Dr Flandry. Not only did the surgery go great but the hospital was five star with a super and friendly staff.This was my third attempt at relief over the years to improve range of motion after bilaterlal TKR about 10 ago.Dr. Flandry spent the time emphasizing to me my vital roll participation in the rehab process, Sucking it up and making myself hurt in additon to what the PT folks do. Also the role that resting, icing and avoiding inflamation plays.I have been doing my part I think but he is my absolute hero now because of his no nonsense approach and extremely diligent surgical abilities. You should see my scar, looks like it was done by a Singer sewing machine. I am 68 years old but I’m feeling 40. May try to water ski again later this summer. I HIGHLY RECOMMEND DR Fred Flandry.

I need a name of a specialist for arthrofibrosis in Toronto, Ontario, or Hamilton, Ontario or London, Ontario, Canada. I haven’t been able to straighten my leg for over a year due to a ski injury and my flexion is not that great either. I have had a meniscus repair, scope with MUA and an MUA a couple of weeks ago. Knee has stiffened up and range of motion not improving. Thanks!

have you found a good arthrofibrosis surgeon in ontario yet? i had 3 surgeries with one of the best rated knee surgeons in ontario, but i don’t recommend him. his name is getgood. as funny as it sounds, i did not “get good”

I injured my right knee when I was young, and have had a series of surgeries on it over the intervening 40 years. I then tore my ACL beyond repair so I went ahead with a TKR in 2012. I informed the Dr. I had a metal allergy, even showed him the snap on my jeans that is covered with moleskin, and he fed me a line about what happens on the outside doesn’t happen on the inside, and the difference in epithelials, and proceeded to implant an alloy joint. I then spent 9 months in bed, unable to walk or really do anything. The swelling was severe, it was hot enough to cook on. After 2 more surgeries, he sent me to find answers for myself. The 5th doctor ordered a blood test, and I am allergic to metals….They took out the offending joint and replaced it with a Smith & Nephew Oxinium joint. They have since done 6 more surgeries to clean out scar tissue because the immune response has not stopped. The last attempt to clean it out proved to be unsuccessful. The scar tissue is so hard, and there is so much of it, that the instruments would not penetrate and he ended up putting a hole through my lateral tendon. The knee is getting stiffer daily and my range of motion is less than optimal, not to mention the constant pain. Anyone got any ideas?
Have tried:
Acupuncture
massage
anti-inflammatories
Nerve desensitisation
Manual Manipulation under sedation
Scopes

Do you or anyone else out there, know of anyone that has gone through this type of surgery. Was it successful for them?

I’m considering becoming part of the study, but I’ve been through MANY surgeries previously. The last one left me with tremendous pain for months. (some of it has subsided a bit, but my AF is still terrible), I ‘m so fearful that another surgery might make my condition even worse, rather than better.

I saw that post as well, under “Share your experience” but what I saw was someone sharing an article about it from The Wall Street Journal. I had TKR 3/2016, then Arthroscopy and MUA 5/16 and 8/16. Then I found Dr. Mayman. It is amniotic membrane that they insert and treat patient with combination of cortisone and anti-gout medicine (it’s an anti-inflammatory). My surgery is scheduled for January 2017. I am excited/terrified/nervous, all at once. I too have had excessive pain, makes my pre-TKR pain look like slight discomfort. I pray this works and have found that in addition to CPM machines for the flexion (which I am not that bad with) there is another machine EPDI?? not sure, for the extension. I am going to be sure I get that. And when I see cryo-therapy helps I just nod, because ice packs give me the only relief I get. Wish me luck. I wish you luck as well.

please keep us posted. i am at a loss as well. i had tkr 10 years ago which did great. i was selfish and asked for an arthroscopy to clear out a little scar tissue and everything has been downhill since. two arthroscopies, change out my native patella for implant, change out my patella implant for a new implant and i still can’t walk. i have great extension and flexion but i have a growing mass on the surface that i am sure is fibrous tissue preventing my patellar implant from adhering to my bone. 5 surgeries in 5 months and i can’t walk when 5 months ago i was skiing and biking and hiking. i heard on a blog about this possibility and now i believe it’s real and i will follow your progress with hope. we all just want to walk again without pain.

Surgery is two weeks from today. My pain and lack of mobility are increasing. I am still terrified/thrilled. I am asking questions-lots of them. I am researching best PT for me after surgery. I am going to do everything within my power to get a good result. Dr. Mayman has expressed to me that good PT is critical for a good recovery. I will travel to NYC for it. I am going to try aquatic therapy as well. I’m going to work this like it’s my job. I want my life back badly. I have a son getting married in nine months and I intend on dancing at the wedding. I will keep you all posted. This is a dreadful condition, and I bound and determined to overcome it. Wish me luck!

Anyone ever tried ERMI (End Range Motion Improvement) which is just a fancy term for an extension machine? Similar to CPM machine, but works on extension rather than flexion. My surgeon also recommends a “cold machine” Game Ready. I’ll spend my entire days/nights on PT, CPM, ERMI and cold machine if it will help!!

Pain meds–the percocet really didn’t help with the pain, but made me lethargic and foggy. Is there something that can help with pain but not make me brain dead? My original surgeon wasn’t a fan so I only got one month after TKR and one week each time after Arthroscopy. The time delay percoset in hospital had me hallucinating. Been taking nothing but Tylenol and Advil since, and they don’t do too much either. This really sucks. Really.

I had my surgery on 1/13/17 it ended up being a total re-do of the replacement, and it was like a miracle. For the first time in 9 months I could stand straight and bear weight on my left leg. At this point I don’t know if I got the amniotic membrane or not, as it was not mentioned again. I went to inpatient rehab, which was a waste of time as they simply led a group of us in the most basic of exercises, which I could have done myself. Then Dr. Mayman had said I should come to city once a week for PT and do other sessions close to home. I mentioned this to desk staff at local PT and she advised insurance wouldn’t allow that. No clue why they should care, they are covering 30 visits and that is it. I hauled myself into city and am very glad I did. The PT at HSS is outstanding. This is a team approach, and Dr. Mayman;s team was looped in as well. Since then, I have had the scar tissue return and I have used up all my PT. I had a MUA on 3/30/17 and then did intensive PT, which included pool therapy (a blessing). So, I am doing way better than prior to the surgery, yet I am still struggling. My problem prior to revision was extension which was nearly 30 degrees the day the revision was done (its now 6). I am having more of an issue with flexion now, which seems stuck at 95-99 degrees. I am appealing for more PT. In the meantime I joined my local YMCA and go there and do the pool therapy routine that was recommended by HSS therapists. The pain–here’s the best part–while it is still stiff and cement like, I am not experiencing anywhere near the paid I had prior to surgery. People say they can tell I am feeling better just seeing me. Apparently the pain I was experiencing before was evident. I have returned to work. I use a cane but not in my own home and am trying not to around the office. I get up and walk around and use ice packs at the office. If I sit too long it takes a bit to get moving again. I take only Tylenol extra strength in the morning and at night. Doc had prescribed Naporoxen for first month, as that is used up I will contact him and find out if I should refill. One other thing–there was a mix up with the meds when I went to inpatient rehab after HSS, and oddly enough, again after the MUA, so though prescribed, I never got the gout medicine they also prescribe to try and prevent the scar tissue from taking hold. I am probably going to need another MUA, followed by the intensive PT, and I will be sure I get the gout medicine this time. No easy answer with this monstrous problem, but I am not giving up, and as I said, I am MUCH better than I was, just not fully there yet. I wish all well in their pursuits against this dreaded ailment.

I have faced a similar situation. TKR, mua, open scar tisue removal, another mua, then a revison to the oxinium implants 3 weeks out mow looking at yet another mua.. my physical therapist said she heard of a patient using some sort of laser but didn’t know what it was called she said it could only be done once a week because it does burn the skin but it breaks up Scar Tissue internally. Wonder if you’ve heard of anything like that

I’ve been going thru much the same with the fibrosis issue and can’t get any surgeon to operate again to remove the scarring. It was removed twice after a partial knee replacement and once during surgery for a TKR. Two surgeons have said it’s pointless and I will just have to live with the debilitating pain and lack of enough motion to use it for much at all. I really worked hard, thru the pain of rehab and it was suggested by my family doctor that if I had perhaps not gone so hard I would not have kept tearing muscle, thereby laying down more scar tissue on a daily basis. Surgeon doesn’t agree, though it seems to make sense. I’m still trying to find an answer and hope you can find something. It is hell on quality of life, for sure, and in my case I’ve had a lot of life ending thoughts. Especially as my other knee now needs a TKR and if I do that I will probably have two useless knees or more useless than now. If you’re like me it’s the pain more than anything that takes over as it’s 24 hours per day. Hate to send you such a doom and gloom reply but this is the answers I’m getting and not sure if I’ll find any relief. Meanwhile it’s almost a year since the TKR and all I can do is keep riding a stationary bike in the hopes that after another year or so this tissue might become more flexible. I can push it past ninety degrees if I keep at it but then two minutes off the bike and I can’t get be about 80 degrees. Another problem is I can’t straighten the leg either and nothing seems to help me there. Good luck to you and I know I will keep coming back to these pages to see if anyone has found success.

I meant to mention, Sue, that I went to laser therapy and it did nothing for me. Had about eight treatments but no results. They are not particularly cheap either. I’ve also tried massage. There is a new treatment that claims to have had success called shockwave therapy but I’m just now investigating that option. Only thing is I’m not covered by any insurance and it is very expensive. Not even sure if insurance would cover it. Probably just another waste of money anyway. Good luck to all, it seems we need it.

Sounds terrible and I’m so sorry. I had a TKA in 2009 with a manipulation and 9+ months of an incredibly difficult and painful rehab. Prior I was a very fit 54 year old male. I cycled 40 miles before the surgery. I did the surgery so I could walk again.

I had one good year and then something happened and I developed a big effusion and a a fair amount of pain.

One synovechtomy and clean out and poly xChange later and one total revision I am more worse and in a lot of pain. Somehow my semimembronsis tendon developed a chronic bursitis.

I don’t have arthrofibrosis per se, but I do have a ton of thick, semi-hard, gooey scar tissue and a lot of fluid.

My HSS Surgeon wants to go back in and clean out the knee and put in an Amniotic Membrane – I’m very worried about getting evrn worse

If you do that, then use HSS therapists for the PT post-op. They deal with mostly problem cases. They don’t just do the normal range of motion exercises. They are very hands on with massage and bending, stretching in ways you could not do yourself. They constantly monitor and adjust your therapy for best results. If you have a ton thick, semi-hard, gooey scar tissue, then you have arthrofibrosis I am afraid. The reason they use amniotic membrane is they found when they started doing in vitro surgeries, that when born, the babies had no scars, so they studied and deduced that the amniotic membrane prevented scarring.

Does anyone know of or recommend a pain management specialist in the Chicago area (Northwestern, Rush, Lutheran General, NorthShore) that is good and/or acknowledges that AF exists? I’m 3 years post ACL recon with 2 subsequent LOA’s and although I have a decent ROM (not passively), the pain seems to be getting worse as more and more scare tissue forms. I’m on a bunch of things (nerve side, SSRI, ibuprofin, tramdol) but they aren’t helping anymore. I’ve tried to go back to my norco stash and it makes me so sick that I’m better off without it.

Another surgery really isn’t an option after the last LOA because the scar tissue was on/around everything and there is much else they can move/take out without more collateral damage. I’ve maxed out on PT and tried acupuncture, chiropractor and massage, but they don’t provide much relief – if at all.

Looking for recommendations of PM specialists and any suggestions to deal with pain!

Dear P N
My friend goes to Innovative Pain Specialists They have a few locations. Arlington Heights,Libertyville and more. # 847-593-6800 My friend goes to Dr. Louis and is very happy.. Good luck. Teresa

Hello,
After 3 major knee surgeries in 20 years then finally a total knee replacement I developed Arthofibrosis. I had a MUA and 2 surgeries where the doctor cut and lasered all the tissue. Both times the tissue grew back.
It’s been 3 1/2 years since my last surgery. I was left in chronic pain and my leg is weakened even though I workout regularly. My ROM is 90 and flexion is -3. I spent 2 years in physical therapy. I tired Accupuncture and “medical massages” for the pain. I finally found relief with Cryotherapy.
If you haven’t heard of it, google it and see if there is a place near you. Even though I don’t have any change in my ROM or flexion, I no longer live in pain.
I feel so good that I am back skiing. It’s difficult on the chair lift because my leg won’t bend but I figured out a way to do it. I’m living an almost normal physical life again.
I was pretty devastated when I found out there was no cure for this but at least now I can live with it and enjoy some of the sports I always loved.

I had a TKR in December of 2014,6 weeks later a MUA and then in another 2 weeks another MUA.In the 2nd MUA they fractured my femur. So then no pt… My ROM is -5 extension and about 65 flexion. I used to be very active and now I can’t do anything.I walk with a limp,have to walk down stairs sideways,can’t ride a bike,etc. Does anyone know a Doctor in the Los Angeles area that deals with patients with AF?

Laura,
Your situation sounds very similar to mine. I’m thinking about trying Cryotherapy… How often do you go in for a session? Does it help with anything else, or just the chronic pain from the arthofibrosis?

Hi,
Does anyone knows a good doctor in NYC or Miami? I live abroad and only have relatives in these two cities.
Im 31 and have been suffering from extreme pain after one meniscal repair+ microfracture surgery, and a subsequent procedure to remove scar tissue. It appears that the scar tissues are back and worse. I can barely walk, my quads are wasted and my active ROM in flexion does not go beyond 90 degrees. Bending my knee feels like a knife is cutting through my skin .Im about to lose my job as I have been on leave for 6 months and my doctor tells me I have nothing to be concerned of..like its all in my head.
I have read great things here about DR. Finn in Chicago, but I know nobody there and have never been to Chicago before.
I hope I can find a solution because Im feeling my life is going down the drain. There is only pain, every single day of my life. Pain.

Hi Marlene,
Im 19 and I tore my Acl last february and for the last year I have had 5 knee surgeries, 4 of them just to remove scar tissue. I have tried everything but it just grows back thicker and the more time passes the more painful it is. The last surgery I had was in December of 2015 and I also had a treatment of radiation before the surgery hoping that would stop the scar tissue from forming, but it didn’t stop it. I just recently went to Mayo clinic for this problem and they told me that there is no cure. They gave me a flexion/extension brace to try to break up the tissue. They told me that it is just going to be a matter of time. Im striving for 115 one day, they assured me that people are able to function almost normal with that degree of flexion. I am currently at 90-95. Im sorry this is not the news you wanted to hear but I felt I would share my experiences with you. Goodluck to you and I hope one day you will be able to reach at least 115. Don’t give up. Im right here with you.

Marlene
I have zero degrees of flexion in my right knee resulting from two TKR’s that failed and resulted in aggressive growth of adhesions/scar tissue. I flew up to Chicago from Oregon to consult with Dr Finn tomorrow. I have read his journals which was published in the Wall Street Journal and read about his successes working with others re: AF. I have been with no flexion and chronic severe pain for 10 years. So, I will let you know what my outcome is. Just remember, everyones circumstances are different and your DNA/genetic factors can come out different than anyone else. A consult would be best for your particular case, in my opinion. I’ll b in touch. Good Luck

Hi to all of you arthrofibrosis suffers. First of all, thank you to those that responded to my post above.and for all of the wonderful insight many of you provided. My best wishes to you all. At the age of 58; I remain in chronic pain of 8 on the pain scale with 0 degrees of flexion in my right knee, bursitus in my left hip from my chronic limp and back issues partly caused to the twisted way I have to get up when you cannot bend your knee at all for the past 12 years. The great news is I am going in for surgery April 11th, 2017 in Chicago by Dr. Finn. After my consult with him, he believes he can fix the knee using his articulating knee he developed, radiation therapy prior to surgery and physical therapy twice a day for eight weeks, in Chicago. We live in Eastern Washington in the Pacific Northwest, so living in Chicago away from our beloved dog Murphy and our home will be challenging to say the least, but exciting. I just can’t imagine not living in pain day in and day out. This will be my third replacement on the right knee in 12 years. I also had a replacement on the left knee in 2013. My left knee flexes, but the prosthetic is significantly smaller than the device in the right. Although, I have adhesions in my left as well as my right, I at least have fexion of about 80 degrees. It is painful also, but not to the degree of the right. So, I go with excitement, butt scared to death knowing what is coming. With fibromyalgia, my pain levels are quite intense, even with pain meds. But, with lots of support and maybe many of you will keep me in your prayers, as I will all of you for success towards a better quality of life for all of us. Thank you for listening.

It mentions three doctors in particular, and their innovative work in the field. Has anyone had any experience with any of these doctors?

1) Dr. Abdel (Mayo Clinic): Genetic testing to determine genetic causes that lead to heavy scar tissue build-up. Leading a clinical trial to evaluate the use of anti-inflammatory medicines
2) Dr. Henry Finn (Weiss Memorial): Exposes knee to low-dose radiation just before surgery, which helps reduce the scar tissue formation
3) Dr. David Mayman (HSS): Running clinical trial for arthrofibrosis patients, where he places a membrane made of amniotic tissue from donated placenta in the knee during a lysis of adhesions procedure.

Bret, I haven’t been on this site for awhile, but tonight I see your email from March – hopefully you have found a dr. and relief by now. However in response….after having to research my symptoms on my own, no dr. ever told me I had AF ( I had 4 surgeries, which included 2 TKR, 2 scar tissue removals, before I found Dr. Finn)

Quite upsetting to see that Dr Mayman is doing a clinical trial, yet he never told me that my condition was AF. ..

When we discussed surgery , he told me that he was going to have me get a radiation treatment, and then right before surgery, he decided to treat me with high doses of vitamin C, rather than radiation. My surgery was unsuccessful and because I was desperate for help, and he/they had no answers they dismissed me. They won’t even take phone calls from me. Now to find out he he’s doing a trial. He probably wouldn’t take me on as a patient again. But I”m going call HSS . That surgery was Summer2013. Dec. 2015 Dr. Finn performed surgery on me…..great hospital, great dr, but he was not able to get rid of my AF…so disappointing. I’ve been out of work for 7 months. I’m in pain 24/7, so limited in my activities. I was quite active previous to my lst TKR, now, I’m disabled. It’s upsetting, depressing, and painful. Good Luck to you..pls. let me know if you were able to get into Dr Mayman’s trial, thanks.

I have been VERY strong through this hell of AF. Upon reading your post I literally cried. Had TKR 3/15/16. Star patient. Sent home early from rehab. Six-seven weeks in not progressing and feel like huge rubber band in my knee being pulled taut. Have arthroscopy w MUA 5/13/16. Initial.improvement but feel it coming back. On 8/9/16 do it again. Surgeon ordered CPM for 3 weeks. Got better flexion but extension couldn’t get past 10-12. And the pain. I had 3 kids and many dental procedures with no anesthesia so I am no wimp. The pain before TKR I now consider discomfort. 24/7. Ice packs offer some relief. But I can barely walk with a cane and it’s exhausting.

After all this I used a very good connection to find a great doctor. And you mentioned him. Hence my tears. I had already figured out via Google that I have AF. Praying when Dr. Mayman does surgery in January I will have good outcome. I don’t know if it’s still a trial but he talked about amniotic membrane. Apparently babies born after microscopic surgery in utero have no scars. Praying this is the answer.

Hello.
My name is Kristin and I’m wondering if it’s possible to develop arthrofibrosis after multiple hip surgeries?? I had 8 right hip surgeries within a 2 year period – 2 arthroscopic procedures, with the 2nd one being very extensive, I then had my first total hip replacement which failed within 3 months, followed by an I&D for an incision infection, then 2 more hip revisions after that. My last surgery was 12/07 and for the last 2 years I’ve had off and on problems with the hip. I’ve seen 5 ortho surgeons who can find nothing wrong. I will say that the imaging they’re judging this off of are MRI scans in which the hip joint cannot be visualized due to the huge amount of metal hardware I have – 8 screws and a plate (they fractured my pelvis during the 1st hip revision). Labs and tests to make sure I don’t have an infection or metalosis going on have all be negative. All of the surgeons are looking at my case within the “box” of what normally is wrong when a post THR patient has pain. What I keep asking them to do is to think outside that box since what’s left in my hip and how it structurally looks is going to be vastly different than someone who has had only 1 THR. The episodes of debilitating, excruciating, stabbing pain from my groin to my knee are more frequent and I’m absolutely desperate to find some answers. I’m wondering if the possibility of arthrofibrosis might be the cause of my symptoms. More specifically, if the excessive buildup of scar tissue could be pinching a nerve in my groin. The pain starts with what feels almost like a muscle spasm that triggers a nerve that shoots stabbing pains down my thigh. I am a nurse and I love my work, but am unable to work when the pain is like this – I can barely walk when it’s bad. I had my first hip replacement when I was 36 yrs old and am now only 45 yrs old. I’ve have so much in life that I want to do, but am extremely limited with the pain that will randomly come & go – lasting anywhere from 3 days to 2 weeks at a time.

Thank you for your time and I welcome any thoughts or suggestions anyone may have.

Hi all, does anyone now of an AF practitioner in Pennsylvania or Maryland?
How about any comments about the docs at John Hopkins in Baltimore?

I am a 73 yr old very active person (athlete) that has AF. What started with pain in my left knee caused by sports prompted me to check it out and so I had about 4 athroscopic surgeries in 10-15 years prior to my first TKR surgery. I was then diagnosed with AF. I had my 2nd TKR surgery due to my being limited in doing sports and of course limited ROM.

I am now reviewing this and other related sites to get both an honest opinion about JH in Baltimore and also for finding a new Dr. that can help (am looking at the Steadman Clinic and Weiss Memorial Hospital).

I had a TKR February 2012, followed by a revision March 2013, April 2015, and a manipulation under anesthesia (MUA) July 2015. With all that, no improvement in my knee. I have ROM at about 70-80, I can’t lay my knee flat, I have severe swelling and pain after sitting, standing, or walking only a few minutes. I have gotten 2nd and 3rd opinions from two additional orthapedic surgeons and they all say my surgeon did everything he could for me. I last saw my surgeon and he informed me that he felt I would not have much more improvement. My knee is still warm to the touch and discolored like I just had surgery weeks ago. I found this site a few months ago and sought out a specialist because I was informed I have scar tissue (Arthrofibrosis). I live in Florida and have travelled all the way to Chicago to see a specialist. If anyone has any knowledge of Dr. Charles Bush-Joseph, I would be glad to hear your thoughts. I will share what I find out from him.

I sympathize with everyone on this Forum re: their problems with arthrofibrosis. It is a terrible condition that is extremely difficult to find doctors with the expertise in this area. I know of what I speak. I too have severe arthrofibrosis following two TKR’s on the same knee. In the past ten years I have had 4 manipulations, following replacement surgeries, months and months of physical therapy, used CPM machine for months, you name it and I still get AF. I’ve been to three orthopedic surgeons, one that works on very complex orthopedic issues, and none of them could help me. My ROM is 0 degrees so I know all of you can imagine the extreme pain I am in and the impacts to my body I endure just to live.

I will go anywhere to find a top notch doctor that specializes in AF and can help a person that has a prosthetic and no ROM.

Can anyone suggest who I should go to, (Dr Henry Finn in Chicago, Dr Ajai Cadambi in Ft Worth, Texas, Juan “Jay” Rodrigo in Waco, Texas, Dr Noyes in Cincinitti or Dr Eakin in Palo Alto, CA.). I’ve heard very good things about all of these. I just don’t want to make a long distance trip only to find the doctor won’t work on me or cannot offer any solution due to the severity of my AF or the fact that I’ve got a prosthetic. PLEASE HELP ME! Thankyou!

Deanna I suggest you call Dr Finn’s office and talk to his nurse assistant Betty. Give her all the details before you go all the way to Chicago. She is great and very helpful. I live in Cape Cod and am leaving in a few days for my surgery.

Hi Lenore. It has been quite some time since I wrote about my issues with Arthrofibrosis. I have an appointment with Dr. Finn in the next couple of months. I cannot wait to talk to him. I cannot imagine what it would be like to have flexion again and no pain after ten years of this. Betty was shocked when I told her I had no flexion whatsoever, so I am praying Dr. Finn can still fix this leg.

Thank you so much for suggesting him. I have read his journals and it sounds hopeful. We will see. Hope you are doing well. I’ll be in touch once we consult with Dr. Finn.

I don’t know the doctor but I have an excessive amount of scarring inside. My therapist and myself do a MYOFACIAL RELEASE massage which helps the ROM and breaks up the scarring. In 12 session of PTY my range of motion has gone from 70 to 100. Still a ways to go but I do the massage every night at home plus strengthening exercises. I am 67 and so far it is working but slowly. I am also exercising my other knee due to needing a replacement.
I use a BREG Ligament (ACL/PCL) brace which really helps my other knee. When I wear it there is “NO” pain. I am using it as long as possible as I do not want another replacement. The pain and swelling was so bad I needed manipulation and “20 days in hospital” with 2X daily PT. Now I got 3 days a week and the knee is to be about 100 degrees but therapists said not to expect above 110 degrees.

Evonne I also had two TKR and had surgeons who said there was nothing more they can do. I don’t understand why they don’t keep up with what is being done in this field. I studied and searched myself and found Dr. Finn in Chicago. I even called one of his patients by googling her name after I read an article about her success. She was more than happy to talk to me. She was in a wheelchair for 4 years and is now doing fine. What Dr. Finn does is use radiation on the scar tissue and then put in a new knee he developed. I am very optomistic and counting the nanoseconds till i get there. My surgery is March 10 2106.Please contact the office they are very experienced in our type of problem. Good luck to everyone

OMG … I have the same pain, in my (former)good leg. I’ve had 3 Total Knee Replacements on the other leg. I went to pain management for my knee, and the dr. thought the nerve pain had to do w/ my back. The MRI showed a bulging disc L4-L5 ( i’ve had this disc prob for years, as well as herniated and degenerative discs….but the dr. suggested 3-4 rounds of epidurals….I did 3 rounds, I was not a candidate for the 4th, because I didn’t get 50% or better results.

Now I’m going to A.R.T. therapy – active release therapy….the dr. deals with trigger points and soft tissue…i’ve had 2 visits and while i’m there i feel better, but it doesn’t continue.

My pain is horrible, down the front of my thigh and in my groin and hip….i can’t work…between my knee issues and now this horrific nerve pain. thx. for writing. pls let me know if you find an answer, and so will i.

I have been battling AF post a left knee TKA May 2014. I have had an MUA and Lysis of Adhesions which have helped the AF but certainly no way near normal flexion. Extension is acceptable. The knee still swells when active and gets stiff in the evening after a day’s movement/activities. I have turned my attention to and have recently spoken to my Hematologist with regards to the most current research regarding AF formation post surgical insult to the body. I have an impending right knee TKA (Feb 2016) and I want to be as proactive as possible in understanding research related to blockers used to prevent excessive collagen response post surgery….the hallmark of AF. I have done some initial research and will discuss with my Hematologist, however, has anyone done similar research or has knowledge of blockers administered to lessen the formation of fibrotic tissue…..i.e. decor, surname, gamma-interferon, or relaxin? Dr. Finn in Chicago at Weiss Memorial uses a dose of radiation post surgery to lessen the fibrotic tissue formation.
If there is research out their to support use of blockers prior and post surgery to lessen the AF effects we can all benefit from this info. Once you have AF you are left to deal with it and we must keep searching for ways to treat it.

This is coming a bit late. I’m delighted to encounter this website. I am almost 4 years post TKR with AF issues that ensued. That first year was dreadful! I finally found a few on Bonesmart.org that had similar experiences. It also has an extensive library and is monitored by professionals. Just knowing you aren’t alone, is helpful. Dr. Frank Noyes in Cincinnati has written a book on AF that is available for Kindle through Amazon.com.

I had 2 arthroscopic surgery on my left knee to excise large tears in medial menicus leading to a left tkr on 04/28/15. Now I have developed severe arthrofibrosis and even after extensive physical therapy and a mua, I have not seen any improvement. I am looking for an ortho surgeon in San Antonio, Texas who treats this condition. I am fearful that my surgeon who did my tkr is not very knowledgeable about this condition and am looking for another opinion too. I was issued a JAS knee brace 3weeks ago but have not seen any improvement with my flexion. It is less then 90 degrees presently. I was able to achieve excellent extension thankfully but my flexion is poor. As well I have severe osteoarthritis on my right knee. Have undergone arthroscopic surgery to repair two bad tears on my right knee. I’m very frustrated with my lack of progress and improvement. Plse advice me on who I shld see and what I can do soon as time is my greatest enemy. Thank you Carlos

I have the same story as you Carlos; However I am in Boston and I have the same feeling about my surgeon. Were you able to get advice after your posting here? Please let me know and if anyone you were referred to might know of a specialist in Boston. Thanks, Michael

Same story here. I have Aggressive Inflammatory Osteoarthritis in both knees. I have had the same problems as you have, Carlos. I had my first TKR in Feb/15, had a revision done in Sept/15 and then the 3rd revision this past Feb/16. I have a great surgeon, but I live in Canada, near Toronto, Ontario. He is not a specialist in Arthrofibrosis, but is well aware of the disease. As far as he knows, and as far as I can find researching on my own, there is NO cure for the disease. Scar tissue forms at an exponentially high rate in the joint. Nothing can stop it. No doctors have figured out why.

My knee, after this last revision, has remained at 75 degrees flexion and 15 degrees extension. Scar tissue has formed (I can feel it when my knee bends). The knee is still “hot”. The good news is that I have not lost that 75 degrees flexion. That has remained static for about 2-1/2 months now. The bad news is that I have to use canes to walk.

What I have found works best is to move the joint gently. I go to physio 3x a week, and she gently manipulates it. Aggressive physiotherapy was a disaster and resulted in this last revision.

If anyone does find a doctor who thinks they have found the answer to curing this crippling disease, please post on here.

Dear Sir: I apologize in advance for this request but I’m presently suffering from arthrofibrosis after a TKR in Feb. 2015 and an MUA in March 2015. After the surgery and MUA my knee was acutely inflamed with soft tissue swelling and “hot” to the touch as well as a loss of motion. Both my mother and I have histories of adhesion / scar tissue formation but there is no one in the Tampa, Florida area who can diagnosis my current condition as having “Primary Arthrofibrosis”.

Unfortunately I am in need a THR on the same leg as the TKR. I am desperately in need of any information you may have for the formation of arthrofibrosis in the hip and the proper protocol, if any, for PT/rehab after a THR. After my MUA the orthopedic surgeon’s protocol indicated “Aggressive PT” which is apparently not indicated for an arthrofibrotic knee. I would greatly appreciate any information that you can provide.

In the last 4 years I have had 3 knee replacements, 2 revisions and 3 manual manipulations to my left knee. I developed arthrofibrosis after the first replacement that has returned after each surgery with both aggressive and non-aggressive physical therapy. The first surgeon measured my knee for a 9 mm hi-flex insert but inserted an 11 mm insert instead and I have been in pain ever since. My range of motion is extremely limited. My last replacement in December 2014 included a stem which extends significantly down my left leg and causes extreme end-of-stem pain when I walk. The stabbing pain sometimes radiates to my ankle and both sides of my heel. It is so severe at times I cannot walk more than a few feet. I cannot work and my savings is dwindling rapidly. I am so desperate that I am even considering amputation.

Does anyone know of an arthrofibrosis specialist who also treats end-of-stem pain? The pain in my shin has become even more painful than the scar tissue growth around my knee. My quality of life is zero; the pain has become pretty unbearable, and I really need help.

Hi Susan,
I just had a knee revision and I have the same symptoms in which you describe. Have you found any relief from doctors that treat Arthrofibrosis or deep tissue massage? I too am seeking help.
Bo

Hi to Susan and Bo,
I’m having the scar tissue buildup with my TKR. Some days are better than others pain-wise, but I have found that going to a medical massage therapist (deep tissue massage) helps a lot! I go once a week to see her, and I still do PT twice a week. I’m looking for an arthroscopic surgeon for a consultation in Atlanta, GA. I think my surgeon may have given up on me since he feels that neither manipulation nor arthroscopic surgery would be of little to no benefit to me.

Phil,
I am 4 months post-right TKR and have arthrofibrosis throughout the knee. I still have good extension and flexion but great pain on walking and driving because the adhesions “catch” in the knee. My knee cracks, pops and clunks. My orthopedic surgeon here in Rome, Georgia hopes that the scar tissue will smooth out in a few months so that I can avoid additional surgery. The scar tissue is so widespread that I might not be a candidate for arthroscopic surgery. Aggressive PT and excruciating regular stair climbing have only worsened the problem. Have you found an ortho in Atlanta who has helped you? Do you have a resource for deep tissue therapy? Thanks.

Such a similar scenario as mine. My life changed dramatically after my first Total Knee Replacement., June 2011. Since then I’ve been in pain everyday, all day. I too thought of amputation. Since June 2011, I had 2 revisions, 2 Scar tissue removal procedures, and 3 MUA’s.

My last surgery was December 2015…I went to Chicago and stayed there 2 months and 4 days. For me the surgery was unsuccessful, and I now have additional painful medical issues related in my shin, ankle, and foot.

It’s so upsetting. I was suppose to return to work 3/7. There is no way I can return now, nor probably in the near future. I try not to be negative re: my condition, and progress, etc., but I don’t think I’ll be able to return to work ever. I miss teaching, I miss my students, but have not been a 100% great teacher since when this all started 6/11.

My pain is bad. I think my tolerance of pain has increased, but I still don’t want to live life in chronic pain. I continue to research for anything that might be helpful. Not one doctor had any answers for me. Now I feel so alone. I have this new horrible condition, and have no doctor that can help, nor cares to speak w/ me anymore because I have not been successful.

Dr. Finn and staff are great! Weiss hospital is wonderful. The nurses are so helpful and compassionate. If you’ve tried getting better via your local doctors, and haven’t been successful, definitely go to Dr. Finn. His success rate for helping patients that have stubborn AF is excellent. It’ is worth going to Chicago. Make sure you go there remembering that your knee recovery is #1 . Do your exercises regularly. Don’t worry about work/chores/etc. Don’t worry about going home ASAP. You’re there, for your “miracle” surgery. It’s your chance to get your life back. Best of luck to you all.

My body/knee/scar tissue is SO STUBBORN. Dr FInn did everything he could. My knee is a puzzle to all the medical professionals I ve seen. But can t imagine living with this pain for the rest of my life. I deAL with the pain,because I have no other choice. If ANYONE has any ideas /suggestions that I can research, PLEASE let me know. So desperate to be out of pain. So anxious to get my life baCk. Been in pain for almost 6 years. I m tough, but this pain now is dibilitating. My knee probably cannot handle any more surgery. Thx!

Chris,I think it s very rare that it doesn’t work, so if you are thinking about it…DO IT! Imagine your life without pain. I would try anything, but I ve tried so many different therapies and surgeries, I don t know of any others for me right now. Good Luck!

I would be very careful going to Dr. Finn at Weiss Memorial. I went to See Dr. Finn in August, 2015 for severe arthrofibrosis in my left knee replacement. He said I was an excellent candidate for his radiation treatment and “Finn Knee” He, however, was unable to due the surgery himself because of his own health issues(he needs a knee replacement and could not stand long enough to due the surgery), so he referred me to his partner Dr. Yasser Farrid. I saw him the following day and he agreed to do the radiation and surgery. The radiation is actually administered right before the surgery, not post-op. I spent a month getting the required testing done before the surgery and was admitted to Weiss on Spetember 21st at 5:30a.m. I was given the radiation at 7:30a.m. and was taken into surgery. Under anesthesia, Dr. Farrid moved my leg around and determine that with a -5 extension and 95 degrees of flexion, I had good range of motion and did not perform the surgery even though I had documentation that clearly stated my passive range of motion was 0 and 130 degrees. I was devastated. I was not given any explanation other than that my pain was just nerve pain and not actually pain from the arthrofibrosis. So, I was exposed to the radiation and did not receive the surgery. Since, then, I have had a bone scan which now shows that my replacement is loose which is most likely the result of the radiation exposure. The staff at Weiss Memorial was also very incompetent. They did not review my records and exposed me to a substance I am highly allergic to which burned and blistered my back. So, I would think twice about seeking help from Dr. Finn at Weiss Memorial.

i am in the seattle area too and will be talking to my orthopod about this. i think i finally have a diagnosis and i will be sharing it with my doctor who really really wants to cure me. if anyone can do it he can, i trust him. i am down in olympia.

I know your story. I too was a teacher. Now I fill in as a sub, tutor, and do after school programs. These options are still open if the pain isn’t too bad and it is mostly stiffness you contend with. Check with alternate avenues to teaching. It might be better than full disability.

Martha, Thanks for your thoughts! Unfortunately, on any given day I don’t know what kind of pain, or what pain level I will have. Right now I’m trying to get relief from horrible nerve pain going down both my legs that is originating from my back. Fortunately, my back is not hurting. I had a spinal epidural this past Weds., which can take 3-7 days to” kick in”. I also have plantar’s fasciitis since surgery, so I’m now paying our of pocket for PT, to try to resolve that issue. All my symptoms/issues are the result of the AF knee, and the inability to bend and walk correctly.

Unfortunately I would not be able to sub because I cannot stand, walk, or sit for too long a period of time. I appreciate your email. Thank you!

Have you found end of stem pain relief??? That is just one of the issues I m hvg post total knee and 2 unsuccessful revisions, 2 scar tissue removals, and 3 unsuccessful MUAs! Also severe swelling of knee And “Good ” leg spasm pain, perhaps from compensating for my awkward walking, and plantars facitis (sp?) In my bad knee foot. Anyone,any suggestions? ??? Life is very tough right now!

Susan, I’ve been down this road (5 knee surgeries, renowned specialist in AF telling me amputation is a possibility, not able to work, in chronic pain, losing hope etc), then I went to Dr Donald Shelbourne. He’s not the only one who can fix, but his team was amazing even giving me a consultation. Point is it’s worth doing your own investigation for a doc who us right for you, who has had a success rate with the exact issue you are dealing with. I had a lot of interviews with knee surgeons over the phone and pressed them on their success rates, experience with my issue, and procedures before/during after surgery. I spent a lot of time researching and cross referencing publications in knee trade journals and research publications, and eventually after months, interviewed 5 surgeons across the country and found my doc… Shelbourne. I took out big loans to cover traveling and life, and ultimately had the surgery and did the post op work. It was over a year post op that I went back to work. Been in pain for 14 years but it’s manageable, and now I get cortisone shots to cover that. I have full extension still and great ROM. Still have to work at it, and maintain exercising and healthy life, but all that was worth it. Please don’t give up!

My partner had 2 surgeries with Shelbourne in Vail. He still cannot bend his knee enough to climb stairs – one would think that in the era of medicine and technology, there would be some kind of treatment for this condition.

Yes, one would think that wouldn’t one? I have had this since early 80’s and it is absolutely beyond my comprehension that they know nothing more today than they did back then (which I was told by both OS and Rheumatologist). The so called “experts” apparently are not particularly interested finding out WHAT CAUSES IT AND HOW TO STOP IT. I contacted the illustrious Vail location’s research department on 2 separate occasions inquiring what they have done / are doing in terms of research regarding the cause and treatments to stop it and never even received the courtesy of a response. Why would they want to find the cause when they are raking in big $$$ from individuals around the world flying there to be “cured”? It is reprehensible.

Susan —- your story is identical to mine. Please find a pain management Dr that hears you & believes you. My replacements were 10+ yrs ago & the pain has never stopped. Pain medicine isn’t perfect but it’s WAY BETTER than none & ive been able to continue my life . I was on the verge of suicide before I went for pain management .

Hi Susan, I just read your story. Man, it sounds like you’ve been living a life of too much pain. My lifechanging surgery was 8 years ago with total knee, malrotated by 33 degrees. Recently a surgeon diagnosed me with arthrofibrosis, and that finally defined why I have been having this crippling pain, which gets worse every year. So many limitations, and much worse with a change in the barometric pressure. This condition/surgery has robbed me of my life (I am 61 now).
I am on a list for surgery here in Saskatoon, Saskatchewan, Canada (Dr. Ivar Mendez). It is called “spinal cord stimulation implant”. You can google Prodigy Chronic Pain System with Burst technology. I am undecided whether to take the surgery. FEAR.
The information that you can google is from St. Jude Hospital:
I have a pamphlet from St. Jude Medical, called Neurostimulation for the Management of Chronic Pain.
1 800 727 7846. I am waiting for their information package The website in their pamphlet is “PowerOverYourPain.com”
I hope I haven’t overloaded you with too much info. As I said. I am undecided. Where do you live? I would like to talk to you.

I have an appt to see dr finn in Chicago in December. I have had a tkr in sept of 13 and a revision in dec of 14. Severe scar tissue and inability to walk have ruined my life. Does anyone have a success story about surgery for srthrofibrosis with dr. Finn. I would love to hear from you. Thanks Lenore

I am a 54 year old active female looking for someone to treat arthrofibrosis in my left knee. I have had multiple surgeries on this knee (more than 8) with the most recent being done February 2012 (knee replacement), March 2013 (revision), April 2015 (revision) and July 2015 (closed manipulation). I have knee pain, stiffness, and limited range of motion. I also can’t straighten my knee and I walk with a slight limp. I am unable to sit, stand, or walk for more than 20-30 minutes at a time without stiffening up and pain. I am looking for someone to treat this condition in the central/south Florida area. Any recommendations would be greatly appreciated.

can someone please tell me if you can apply for social security disability due to arthrofibrosis of the wrist and hand I am in severe pain all the time and my joints swell up and don’t move the doctors say this is permanent any input would be very much appreciated as I cant seem to work at all due to swelling. I was involved in a bicycle accident/hit and run and woke up to a non-moving hand and wrist along w shoulder and neck problems but the arthrofibrosis is the debilitating problem thank you

I am currently on Social Security Disability because of knee replacement surgery and the fact that I kept developing arhrofibrosis and was in too much pain to return to work. If you can’t work and can get your doctor to document that, I am sure you qualify for SSA. I would hire someone to represent you when dealing with Social Security as it is a long process and they will deny you. I was denied 2 times before being awarded.

Does anyone know of a knee specialist around the Sacramento, CA area who deals with AF and or pain management? I had my RT TKA Jan 2014. Dec 2014 my ROM was 82, today my ROM is 27. Along with the lost of motion the pain has severely increased. It feels like it’s in a vice. I am tired of living in pain 24/7.

7/30/15 Thursday – Dr. LaPrade did a “severe LOA and MUA” of right knee to get rid of my scar tissue. Surgery took about an hour and there were no complications. He said he took out “a large handful” of scar tissue. He used a debridement tool, which was a little surprising since I thought they didn’t use this at Steadman Hawkins when treating AF to avoid the bleeding. I sure hope the bleeding is controlled!!
7/31/15 Friday (Day 1 after surgery) – I stayed in Vail to do PT twice daily for the next five days. Day one went well. I still had my nerve block in and really couldn’t feel anything, but we worked on ROM in the morning and evening sessions. Pain was at about 1 which was amazing…I haven’t been there in seven years.
8/1 Saturday. I was introduced to the 3rd PT that I’d be dealing with while at Howard Head PT. He’d be helping me all weekend. I was feeling really good in the morning and there was no real swelling. My nerve block was definitely still giving me some relieve! For some reason, the PT had me do some things that weren’t on the PT protocol list that they gave me for the next three months. He had me do some mini-squats and leg pulls and I didn’t understand why. I should have said something, but I didn’t. I started feeling some pain and discomfort the evening of 8/1 .
8/2 Sunday. I was pretty sore in my quads, but we continued with the mini squats and leg pulls in addition to other ROM work. I also did the bike for 5 minutes in the morning and 10 minutes in the evening. I was very sore the evening of the 2nd.
8/3 Monday. Back with my 2nd PT today. I was so sore that he had to spend a lot of time doing soft tissue work to relieve the pain enough to do simple ROM exercises. He still had me do a few mini squats until he saw that it was just too painful. My PT in the evening (he was new and my 4th PT) stopped all of the strengthening exercises and focused on regaining my ROM. My knee was very sore and a little swollen, but didn’t feel hot, thank God.
8/4 Tuesday. Last day in Vail. Two sessions where we focused on soft tissue and quads that are very tight and painful. I’m not seeing much progression with my ROM at all because of the pain and tightness in quads. Drove to Winter Park Tuesday evening and will rehab there until Sunday. I will be seeing a PT in Granby.
8/5 Wednesday. I was so sore that I didn’t make it to the PT today. My knee is very sore, tight and pretty swollen.
8/6 Thursday. Went to the PT in Granby today. He was surprised at how swollen my knee was. We focused on ROM exercises and he showed me how to use a regular old rolling pin to roll out my quads and relieve some of the tightness and pain. It really worked. Thursday evening was very tough! I slept in the CPM as usual, but when I woke up my knee was very tight and swollen. On top of that I had a major headache. My ROM was not progressing at all and I was getting very worried! I kept doing the CPM, extension exercises, wall slides, etc.
8/7 Friday. I decided to not go to the PT and to work on my exercises at home. I did a lot of exercises, including the CPM, but my knee seemed to be swelling up more and getting more painful. I emailed Dr. LaPrade’s PA to inform him of what is going on. Unfortunately, Dr. LaPrade is out of the country and his whole staff is off for the next week and a half. Friday night was very tough!!
8/8 Saturday. I woke up and my knee just looked terrible….very swollen and painful. I called the office to leave a message for the on call Dr. He called me back quickly and asked me to send pictures. I did and he said it looked very swollen and uncomfortable and asked if I could come back to Vail so he could see me. We packed everything up and went back to Vail. The on call Dr. was very helpful. He decided to drain my knee right away and he took out 180 cc’s of blood. He said it didn’t look infected, but he would send it off for tests. He said that was a very large amount of blood and understood why I was so uncomfortable. He said that I needed to let my knee calm down and heal until my next appt. on Wednesday…no PT at all. We decided to head home to Denver Saturday night. My knee felt better right away!! I was able to almost full extension right away. Flexion is a different story.

Obviously, I’m very worried that I can’t do any PT until Wednesday. I know that scar tissue loves blood, so that probably isn’t good that I had so much of it in my knee for who knows how long? I’m very frustrated at this point, but trying to stay positive!!

Hi Rick, I hope you are doing better. Dealing with AF for 3 1/2 years I have learned ( albeit the hard way) to listen to my instinct and my PT’s at Howard Head have taught me that it is ok to say no to exercises my knee does not “like”. Just remember that the recovery is “glacially” slow! Everybody is different of course, and in the end you will quickly figure out what your knee does not “like”. The whole process is like taking two steps forward and one back ( and sometimes even two back). Hang in there!!! Saskia

Unfortunately, I’m not doing well with my AF. My “good leg” has compensated for the AF knee and lack of ROM for so long that I know have major pain in that knee / leg and it’s making it very difficult to walk and get around these days. I won’t even consider another TKR, so I guess I’m stuck with the pain. It’s hard and I really feel for anyone that is battling this monster!! Let’s keep hoping and praying for a miracle drug to break up scar tissue!!!

I had a TKR of my left knee on Nov 18th; it was successful but I developed a blood clot which limited my physical therapy. 6 weeks post surgery I had a MUA to help break up scar tissue. Many months later after agressive physical therapy, massage therapy and water therapy, I now have arthrofibrosis. I may need another MUA or more surgery to revise the joint and remove the scar tissue. Any suggestions what I can do to avoid surgery? Any Boston area surgeons to recommend for a second opinion?

I saw Dr Wolfgang Fitz at Brigham and Womens. I saw him after I developed arthrofibrosis after TKR in 2011 and he identified the cause and did a revision in 2013. He did a great job, is a nice guy and the second surgery was such a better experience.

Another Boston knee orthopedic is Dennis Burke at Mass General. I never saw him.

Susan there is no one in Boston with enough experience to do this surgery. i live on Cape Cod and have called everyone. Save the energy and go right to the best in the country,DON”T do any more surgery. If you have arthrofibrosis it is a waste of time. I wish someone told me that. I have wasted a year and a half of my life in extreme pain.Scar tissue grows right back you have to eliminate it, Good luck

Will Steadman Clinic in Vail, CO treat me I had a TKR 1 1/2 years ago and have AF. I am in so much pain my Dr won’t even address it and I can’t take much more. If not does anyone know anything about Dr. Henry Finn at the Weiss Memorial Hospital in Chicago, IL? I’ve read some good things about him and even spoke with his nurse but would like some referrals.

I can’t speak for every doctor at The Steadman Clinic. Dr. Steadman is retired now. Dr. Singleton has taken over his practice. Both rarely–if ever–take patients with prosthetics. Dr. Steadman said that in a lot of TKA arthrofibrosis cases he’s seen, the cause is an ill-fitting prosthetic, so no matter what he does, the scar will come back because the underlying cause hasn’t been addressed. I asked him who he’d recommend for TKA arthrofibrosis cases, and he recommended the following three surgeons:
Fritz Boettner, Hospital for Special Surgery in NYC, http://www.hss.edu/physicians_Boettner-Friedrich.asp…

Hi I recently had an appt. with Dr. Finn.He is amazing. I have had 4 tkr,revisions and have severe arthrofibrosis. He said he can help me. He does very low dose radiation on the knee to decrease the cells ability to form adhesions,cleans out the knee,and puts in a new knee called the Finn knee. He is suppused to have great success. I will have surgery Oct. or Nov. He has many papers,etc. he has written. Good luck
Teresa

I’ve heard a lot about Dr. Finn lately also. Have you talked to any of his patients that have had the procedure done and a new Finn Knee put in? How are they doing? I’d love to hear about some of his results 1, 2, 5 years out! This seems very promising, but I don’t want to get my hopes up too much just yet. Thanks for sharing.

Theresa,
The appt with Dr. Finn went well. He spent 45 minutes with me discussing the X-rays of my implant along with evaluating my ROM limitations. He offered recommendations for a revision surgery to elevate the scar tissue and replace the femoral component. The initial TKA was not performed correctly and Dr. Finn offered his consult to correct the problem. For those of you suffering with Arthrofibrosis with potential for revision surgery I would recommend a consult with Dr. Finn. He has corrected many failed TKA surgeries leading to arthrofibrotic conditions. Dr. Finn is located at Weiss Memorial in Chicago.

Hi,
Just wondering how things went with your knee surgery with Finn. I have Arthrofibrosis and plan to have a revision in June. would love to hear how you are after your revision from Dr. Finn. I hope you are recovering well. I am nervous but feel Dr. Finn is the best. Appreciate any feedback on how your surgery and recovery went!

Hi. I had my surgery with Dr. Finn Oct. 8th. Was in the hospital for 3 days.The pain was pretty bad but it’s getting better as time goes on. before surgery I was 20 degrees extension and 80 degrees flexion. 2 months post-op I am 0 degrees extension and 115 degrees flexion. I have physical therapy 5x/week for 3 months,,but it”s definetely worth it. I would highly recomend Dr. Finn TO ALL. Good luck.
theresa

Hello Teresa, I was trying to locate an update from you to see if you had your procedure w/ Dr. Finn yet? Was hoping to hear how it went, what was done, and how you are doing? I am a Right TKR, revision TKR , and a manipulation patient who suffers from severe arthrofibrosis and am looking for a solution. Thanks.
Jayne

Dr. Kris Alden from the Hinsdale Orthopaedics group has come highly recommend. I saw him after 7 months of complete torture. Had my TKR in December did good until February hit a wall at rehab. Had manipulation in March Dr. got me to 130 in flex and 0 in the extension. Rehab was going well and 1 month later hot the wall again. Physical therapist was a trooper and worked me as hard as he could and tried every to get my knee moving normally. My pain and swelling has increased and I have gotten more than 2 hours of consecutive sleep in six months pain pills and don’t really do anything. Finally my Dr. So from the Hinsdale Orthopaedics group had me go see Dr. Alden and after seeing my films and looking at my file. He did a few test on my leg to see my range and how swollen,hot and hard it was. He told me he knew exactly what it was and that he’s done them and has had success. He’s from the Mayo Clinic and has a wonderful personality he’s very understanding and takes everything you say into consideration. I feel totally comfortable and can’t wait to get it done. I have to see him on the 21st. But I finally have some hope when I was at my wits end and just couldn’t understand why with all the therapy and all the hard work my knee still wouldn’t work.

Rick I had a second revision done on my left knee, this time I received a total hinged replacement and he removed my MCL and PCL. The surgery took place one June 6th 2016. I am now 5 months out and the Arthrofribrosis is back and worse than ever. I saw Dr. Alden in September and he needed to consult with colleagues from the Mayo clinic. Their findings were that he has done all he can for me and that I should try water therapy for six weeks to see if that gets me more ROM.I hope this works if not I have to see him back in six weeks to see if there are anymore options.

Hi; If you do go to Dr. Finn, please give us an update. I have no idea how to go about trying to see an out of network doctor, so if you have any advice I would love to hear it. Anyone out there with a “Finn” knee, please let us all know your experience. Dealing with this since 2007 and reading about Dr. Finn and his “knee” has finally given me hope that I may some day have my life back.

In 2009 I had a total right knee replacement. My pt did not go very well. I even had the passive movement machine. I had two manipulations. By 2011 I was still in a lot of pain my surgeon looked at my x-ray and said it looks good and you are a hard case. he then walked out of the room. By 2011 I looked for a new surgeon. I found out the knee was put in crooked. Thus the reason for my horrendous pt. In June of 2011 I had a right knee revision. I was told up front that this may not help. Again a long pt. My range of motion was still somewhat limited but made it to 93 degrees. Still having pain I returned for my year appointment. Was told the x-ray looks good. Is that the only answer they ever have. My knee always feels warm or hot to the touch. I have been tested for infection. Nothing is there. Just went to see the surgeon again because I am in a lot of pain. My ROM has gone from a 93 to a 48 degrees. I have a difficult time even putting my socks on. I was hoping to get some answers from the surgeon. When I ask him why this might have happened he said I don’t know. Nothing else was said. Except the x-ray looks good. He said I could maybe get it cleaned out but probably only 10 to 20 degrees. Let me tell you 10 or 20 would help me get my socks on. I have been going to pt. I have gained some inches. I now am at 76 degrees. But from there it won’t budge. I leave every day in tears. Not from pain although there is a lot. But from frustration I just don’t know what to do and who to turn too. HELP!!!!!!!!!!!!!!!!!

I have (had?) Synovial Chondromatosis a very rare joint disease in my knee. After several surgeries & complications 4 years ago I am left with a knee that has lost a lot of ROM. My surgeon is great, a specialist in NYC, but at this point he says it’s most likely scar tissue and is hesitant to do anything else. Now I’ve stumbled across Arthrofibrosis and I have a bit of hope! Of course the one NYC dr. listed is not in network with my insurance & I can’t afford to see anyone out of my network. I’d like to see someone other than my surgeon and possibly get a diagnosis. Of course all these other Dr.s are very far away. I’m just happy to see that this is actually a “thing” and that there are potential treatments and that I was right not to give up hope! Now trying to find a specialist in network and that I can get to, that may be more of a challenge! Thank you!

I live in the Boston area, but am having trouble trying to find and make an appointment with a surgeon that has arthrofibrosis experience. I’ve contacted several excellent ones, even one on the site’s list and they won’t see me until one year post surgery, which actually will happen at the end of next month.

But I am in so much pain and since I live by myself, I have been unable to do much for a year that my existence is intolerable.

I had my TKA late last June, and immediately after surgery in the hospital and a nursing home/rehab had extreme problems with pain and not being able to tolerate use of a CPM machine and constant overheating of the knee and bad swelling. I had two manual manipulations under anesthesia last year and while the second one managed to get my flexion rom to a decent level, the knee remained swollen, painful and stiff. I was using two seperate PT’s that I’ve know for years and going twice a week for 10 months, and they could not understand why things weren’t improving.
The surgeon did not pay much attention despite all my complaining. Finally a month ago, he did arthroscopic surgery to to remove scar tissue adhesions, for which there was a lot. Unfortunately except for maybe a few days after sugery, the knee is still swelling and very painful, less than before, but still so much that I can’t walk well with stiffness and pain, I’m close to 4 weeks after the scope and things are getting worse not better.

My name is Antoinette Vigil and I live in Albuquerque, NM. Back in Oct. 2014 I tore my ACL, well in November of 2014 the surgeon reconstructed my ACL using my tibial bone. I went to pt the next day. A month after the surgery the physical therapist noticed that my knee wasn’t bending and my quadricep wasn’t firing up so I went back to the surgeon and he suggested a manipulation surgery. So I got the surgery in January of 2015 and 3 days later the scar tissue came back. I wasn’t able to bend my knee but a month ago started to notice that I was having more pain then usual. I went to another surgeon and they took x-rays and found out my right knee cap was falling low which is called patella infera. At this point I was freaking out, pissed off, and confused. He also ordered a EMG my quadricep because that too isn’t still working. I started googling scar tissue and ACL surgery and found arthrofibrosis. And it turns out that I have stage 4 because of the patella infera. My surgeon wanted to do another manipulation surgery but yesterday I went talk to him to voice what I found and my concerns. Unfortunately he has NEVER had a patient like me so he is stumped onto what to do. Living here in NM there are no doctors who are familiarized with arthrofibrosis. I found this website and started to read everyone’s stories. I know there is doctor in Cincinnati, Dr Noyes, who has studied this problem. The problem I can’t afford to travel there because my husband is a disabled veteran and we live off of a strict income, not to mention we have 3 little kids. I was hoping to get some advice, is there any help I can get? I just want to be normal again. All the normal daily activities that I once could perform I cant anymore. I can’t even walk around my house with feeling extreme pain or my leg giving out. Is there a doctor in NM I can see or just any advice? Thanks in Advance!

Antoinette, if at all possible try and see Dr.Millett at the Steadman clinic in Vail. I think the Steadman clinic is the closest to you of all AF specialists- probably a 6 hour drive. I know it’s hard, I used to drive from Missouri to see him. After two knee surgeries in Missouri with an incompetent doctor I finally found Dr Millett. I had the beginning of patellar infera , could not walk without crutches and was in a lot of pain and severely depressed after 9 mos on crutches. I had three more surgeries with Dr Millett and after each saw significant improvement. My last surgery was 9 mos ago and I am now able to not only walk about 2 miles a day ( albeit slowly) but do the daily chores and live my life again- it’s been 3 years since this nightmare started- its a hard and slow recovery process . If at all possible go and see him- it is vital to only deal with a physician familiar with AF so that you can live and enjoy life again. Saskia

Saskia thank you so much for not only responding, giving me the name of the AF doctor, but giving me some hope. I wanted to know what kind of surgeries did Dr. Milliet do in order for you to be normal again? And did you have any problems with your quadriceps? According to what I have read and researched I have the most aggressive form of Athrofibrosis and it not only affects my knee going lower but it is affecting my quadriceps. I cannot walk without a brace because my knee gives out. And also do you have Dr. Milliet’s information. I can’t find him on the internet? Thank you again for responding to me. I really appreciate it!!!

Antoinette, sorry for the delay in responding. I had my initial surgery for a torn meniscus, which should have been a very simple and easy procedure. Had it on my right knee 10 years earlier- no problem. The doc in Missouri completely missed the development of AF and put me in braces, completely isolating my knee for months- then did second surgery 4 months later because I could not walk and was getting worse- at that time he found the scar tissue, but did not inform me of what the problem was, so I went back on crutches another 3 months until I did my own research and found the Steadman clinic. I chose Dr. Millett. At the time Dr. Steadman was still doing surgeries, but he was very difficult to get an appointment with- as is Dr. Millett but I chose him (and am very happy I did). Dr. Steadman has since retired and he groomed Dr. Singleton to take over for him- both Millett and Singleton are great docs and specialize in AF. My only regret is that I was not informed by the incompetent doc in MO who had never dealt with AF- had I known I would have sought them out much sooner and I believe my recovery would have not been so long and traumatic. Early detection is the key- please go and see them ASAP, especially with Patellar Infera as there is no treatment if you wait too long. But I am sure you know this already.
Each surgery with Dr. Millett was necessary because the scar tissue had returned, although not to the degree it was there initially (before I saw him), but enough to keep me from being able to walk. I don’t think it was quite as aggressive as you describe yours. I can only imagine how you feel- for me it was a long, dark and lonely road- there is not a whole lot of support out there so it is lonely and scary at times; but I can tell you that with a great surgeon, great Physical Therapy and a lot of determination there is light at the end of the tunnel- but please seek out the right people immediately.
The problem with my quads was that because I was immobile for so long, my muscles had atrophied so much that even without the AF I could not walk. It is a long and super slow process to build up the muscles because if you do it to quickly the joint will get inflamed and inflammation equals scar tissue. Its sort of a catch 22- for someone with no patience and a former long distance runner that was the most difficult thing. I am still not able to negotiate steps (I have to do them with my right leg only- up and down) and I am at times still struggling, but I can definitely see progress- I can now walk my dog, and take care of the house by myself!!!
Physical therapy is important after you see an AF specialist- I would suggest to have the PT department in Vail draw up a program for you. Thomas Olsen, Dave Cimino, and Dirk Kokmeyer, and someone named Luke, are really great- they understand, are gentle and very supportive.
I hope I have answered your questions. Don’t hesitate to ask for support, I will be happy to share my journey and answer any questions you might have based on my experience. Please do not give up hope, but please understand the importance of getting the right help NOW. Saskia

My name is Antoinette Vigil and I live in Albuquerque, NM. Back in Oct. 2014 I tore my ACL, well in November of 2014 the surgeon reconstructed my ACL using my tibial bone. I went to pt the next day. A month after the surgery the physical therapist noticed that my knee wasn’t bending and my quadricep wasn’t firing up so I went back to the surgeon and he suggested a manipulation surgery. So I got the surgery in January of 2015 and 3 days later the scar tissue came back. I wasn’t able to bend my knee but a month ago started to notice that I was having more pain then usual. I went to another surgeon and they took x-rays and found out my right knee cap was falling low which is called patella infera. At this point I was freaking out, pissed off, and confused. He also ordered a EMG my quadricep because that too isn’t still working. I started googling scar tissue and ACL surgery and found arthrofibrosis. And it turns out that I have stage 4 because of the patella infera. My surgeon wanted to do another manipulation surgery but yesterday I went talk to him to voice what I found and my concerns. Unfortunately he has NEVER had a patient like me so he is stumped onto what to do. Living here in NM there are no doctors who are familiarized with arthrofibrosis. I found this website and started to read everyone’s stories. I know there is doctor in Cincinnati, Dr Noyes, who has studied this problem. The problem I can’t afford to travel there because my husband is a disabled veteran and we live off of a strict income, not to mention we have 3 little kids. I was hoping to get some advice, is there any help I can get? I just want to be normal again. All the normal daily activities that I once could perform I cant anymore. I can’t even walk around my house with feeling extreme pain or my leg giving out. Is there a doctor in NM I can see or just any advice? Thanks in Advance!

I hope I can help. I had ACL replacement back in Dec 2011. After the surgery, I couldn’t walk on it for 3 weeks by the time I took off my bandage, I couldn’t bend my knees anymore. I went to PT 3 times a week for almost 3 months. My ROM was at 37 degrees. At the time, they suggested that I go back to see my doctor to see if I can do a manipulation. So in March, that’s what I did. I went back to PT 2 times a week for 3 more months. My ROM was only at 45 degrees. I was very disappointed and cried. I started doing research online. I didn’t that I had arthrofibrosis at the time but found this website and started reading http://www.kneeguru.co.uk/KNEEtalk/index.php?board=9.0
I realized that I had arthrofibrosis. I found a doctor in Palo Alto, Ca -Dr. Colin Eakin http://www.pamf.org/dr-colin-l-eakin.htmlHe did my surgery in August and right away I can tell the surgery was different. My knee ballooned the size of a cantaloupe. I was told that it was normal because of the special way they had to do the surgery, it need to make the knee think that it has not gone through any trauma. Before the surgery, I was also told to purchase an ice therapy pack. I got mine from amazon http://www.amazon.com/Aircast-Knee-Gravity-Cooler-Large/dp/B00P3D4CLM/ref=sr_1_7?ie=UTF8&qid=1434010164&sr=8-7&keywords=therapy+ice+cooler This was by far one of the best investments I made for my knee. It’s portable and I had it on my knee consistently for the next 6 months, I even took it to church on Sundays. I was told with arthrofibrosis, I needed to keep my knee cold at all times so that the scar tissue would not grow back. I had a 3 hr drive home after the surgery and we immediately used it on my knee. I also did not go back to PT but did simple exercises at home I’ve learned from previous PT sessions to bend my knee, two in particular: the band on my foot to help bend and the standing one where you cross the good leg over the bad one and use the good knee to back push into the bad one. I also bought a standing bike. For strengthening, I used the excising ball and did squats against the wall and I also did the one where you rolled a small face towel underneath the knee so that you can push down on it while trying to lift your leg and hold. This one is done in a sitting position with your leg straight in front of you. Then I played with my patella, moving it in a circular motion making sure that the scar tissue have not and will not attach itself to my patella.
I’ve kept my ROM at 120 degrees after surgery. A year after this surgery I was able to walk normally and do light running.
It’s 2015 and I still have scar tissues and I can hear them breaking every time I bend or straighten out. But I just keep icing and biking. I’ll keep you in my prayers.

Can someone explain to me why the swelling around my knee and now going up my thigh is increasing? I was diagnosed with arthrofibrosis a while ago. My last surgery was 9 months ago. I don’t understand why it is getting worse.Thanks

My arthrofibrosis has developed in my wrist, unlike everyone else here, but I would love any suggestions. I live in Georgia. I have ulna impaction syndrome. Because of this I tore my tfcc. My surgeon repaired this in the first surgery last July. By November the scar tissue had gotten so bad that I couldn’t move my wrist and was experiencing Extensor tendinitis and having problems using my middle fingers. Surgery in December removed the scar tissue and he did a partial distal ulna head ressection. As a result I now have scar tissue preventing supination as well as scar tissue in my hand which seems to have ruptured the Extensor tendon in my pinky so that I can’t lift it independently.

Can anyone suggest a wrist surgeon in Georgia who has experience with this or a way to find one?

Has anyone been to Dr. Bush or Dr. Terry in Chicago il.? I was diagnosed with AF Have had 2 knee replacements and 2 revisions and manipulations on r knee.My bending is at 90 degrees and ext. at 15.The pain is unbearable. I need to find a dr. in Chicago. Thank you.

I have had five TKR surgeries on my left knee since Sept. 2012 at Mayo Clinic in Florida. The first one took a lot longer in surgery than expected, and then went to rehab hospital for ten days, then of for five months daily. The Rom started decreasing the second day after surgery. Then went downhill from there. The pain was NEVER under controllers or since then. Since no other doctor would see me since Mayo did surgery I had to keep making the 1400 mile roundtrip to see them and have more surgeries. I have had to go thru five at this point, and all by myself. It has taken everything I have monetarily wise and mentally. The first surgeon did another surgery in March 2013 and then. Again in May 2013, and did another revision. I went thru the same rehab and physical therapy to no avail. At that point I had used all of my savings on hotel, gas, food and doctors fees at Mayo. Then I was directed to a new ortho surgeon there, who felt like k e the pain, edema, limited mobility were due to an infection. They did 5 needle biopsies in the joint to see if anybody’s or blood was present. All were negative, and very painful. Then the last time she went BBC ad k in, exchanged some pieces and cleaned up the area. After surgery she stated that there was a great deal adhesions in. The area. The pasteurized was May 2014. Three weeks ago I was told that following the first surgery I was diagnosed with Arthrofibrosis, but everyone failed to tell me. My poo ain management doctor has had me on Methadone, Oxycodiene, Lortab, Norvoc, Hydromorophne, Hydromorphone to no avail. Even the pain doctor at Mayo said nothing will w work. What do I do now? No other doctors will vBulletin see me, having . Extremely hard time even fin d ing a rhuematology doctor to see me with t uhh e AF going on. Please help if you have any ideas. I can not work many longer, on d 9/2011.I stability due to this, can’t walk at . All. SOMEONE PLEASE HELP. I leave in Mississippi,. G of BLESS everyone, I know w uhh at you’re going thru. Thank tying our.

I have had 2 knee replacements in my right knee. The first doctor put in a replacement that was too big for me. It was a man’s knee and I am a woman. Then I went to a very good doc who took out the first prosthesis and put in the right size knee. However, I had a lot of stiffnes and pain in my right knee. I went to a pain doctor who put me on heavy doses of narcotics which made me very sleepy. I fell asleep while driving and totaled my car and broke seven ribs. I decided then that I had to get off these drugs so I detoxed off of them at The Betty Ford Clinic in Rancho Mirage in Nov. 2013. The second doctor had me go to PT for several months because I had very limited extension of my leg. The PT didn’t help so this doctor suggested I have a “revision” of my second knee replacement surgery which I had last week. I am now in terrible pain and my knee is very stiff. After surgery I had good extension but now I feel that I am losing it despite doing several exercises twice a day. So, does anyone know of a doctor in the Los Angeles area who treats arthrofibrosi?

I had right knee replacement in October 20, 2014 I have continuous pain,swelling and vice like pressure around the knee I have maintained continued physio as I cannot walk correctly. I cry a lot now as despair is setting in as my surgeon keeps telling me I will just have to live with the way things are. I cannot return to work as I have too much pain. I had infection in the begining as the emergency at the hospital I had the surgery said but my surgeon disagreed and stopped the antibiotics they put me on. A few weeks later I had infection again so my surgeon agreed with my doctor to put me on antibiotics again. Now my Dr is recommended a second opinion be gotten. I don’t feel my surgeon really has my best interests at heart as I have found her to be evasive about giving me answers to my questions. I am hoping to find a good doctor in Toronto Canada who can help me.

please help, cant find much info on arthrofibrosis of the hip
Iam a 44yro who had total hip replacement on 1/2/13,and have had several ongoing soft tissue issues (trocanteric bursitis,ilio psoas release surgery) i had the psoas tendon release on 11/19/14 and just recently got the operative report that states the surgeon found extensive arthrofibrosis in the hip capsule & surrounding area. The scar tissue was “cleaned out” and i began PT shortly after. I began to experience snapping restricted motion and very bad pain. I have been back to the surgeon 4x and he told me my body produces excessive scar tissue, he never mentioned arthrofibrosis which is in his own operative report from my tendon release surgery. I feel my hip is becoming more restricted in motion and becoming increasingly more painful. The Dr is telling me to strech at home and PT twice a week. He has prescribed nothing for pain/inflamation, wondering why the Dr. Would not tell me of the arthrofibrosis? Going to see another Dr.for IME , i live just north of Boston. In searching for info on this i find only people with TKR. Any info on the hip& arthrofibrosis would help,i feel as if tne Dr. Is ignoring the issue and the pain i am experiencing……this SUCKS.

I tried calling dr gill. They say he does not do surgery for arthrofibrosis. Now talking to dr Finns office in Chicago . I live on cape cod. Have u found anyone to help. I can’t straighten my leg. Had a tkr and revision. Any info is appreciated.

If you have been diagnosed with Arthrofibrosis, you might as well face it, you will never be the same. There is no miracle operation or cure, no matter what any doctor tells you. I have been through it all and six doctors. With advances in medicine and technology, doctors are ambitious to suggest the only way to take care of a worn-out knee with little or no cartilage is to have total knee replacement. It reminds me of the 70’s and all the unnecessary hysterectomies that were done, and yes, I had one of those too.
I have learned to deal with my miserable knee by doing exercise. A small bike, that Walmart carries, will help keep the leg from tightening up, although this is not perfect. The bike is stationary and can be used sitting in a chair. I stopped taking any kind of pain pill, but only on your worse day, you might want an anti-inflammatory. This will loosen up the tissues and you will have less pain. Only take when you are totally miserable and not long term since it will work on your liver. Good luck to all of you who are suffering with Arthrofibrosis and know, you are not alone.

Has anyone had any success at all in dealing with this monster? It’s getting harder and harder to deal with this and no amount of pain meds work anymore (I’m currently taking Oxycontin, Percocet and Cymbalta daily). And now I’ve been diagnosed with low testosterone due to taking all of these narcotics….great, just what I need! Can anyone recommend a good support group (online or in the Denver, CO area)? I would really like to talk to others that are dealing with AF!! My wife and family just don’t get it and I don’t expect them to. I’m 47 and feel like I’m 80.

Please see my original post from January 16, 2014 for more details on my struggle with AF.

In June of 2007, I had my right knee replaced, at UW Madison Wisconsin. I went through 12 weeks of PT at Advanced Physical Therapy in Madison Wisconsin. When my PT was complete, I had 120 degrees of motion…that was really having to have him place lot of pressure on it. As the months went by, the degree of motion declined. My range of motion today is maybe 80-90 degrees. Along with the loss of Motion, the Pain has increased greatly….I am on a pain management program with Dean Healthcare..and that has to be adjusted every year. Dr. Matthew Squire at UW Hospital told me this has only happened to him 2 times in his entire carrier …and thus I am his anomaly…I REALLY NEED HELP…any suggestions

OMG I have the same thing. No one understands. I have had 2 tkr in the past 4 yrs on the same knee. 2 muas and scar tissues removed once. I only can bend 42 degrees. I just had my last one done 9/24/14. The doctor did a y cut on quad to make it longer so I couldn’t walk or bend it for 2 months. Now he says I can go back to work this month. I stand 40 a wk. I am 56 and I also feel like 100. Good luck let me know if you find anything that works.

I am winniing this battle. Had a TKA followed by an arthroscopic lysis of adhesions and MUA. I think my arthrofibrosis would be considered post traumatic as I had an ACL repair done the old fashion way, a big open repair plus a couple of arthroscopic surgeries. I’ve been told by a couple of orthos that I’d be surprised if you got past 100 degrees of flexion, another told me he’d be surprised if I was able to keep my flexion (it was at 87 degrees after MUA and going down).

For the last two years I’ve been working hard at keeping my knee moving, not losing the range of motion I have and somewhere along the way I started making gains in flexion and in reducing the pain associated with this.

Some of the things that have worked for me I just made up as I went along. If there is tight tissue I can feel I try to find a ways to stretch it. And I stretch it until I win. Some prolonged stretches, some repetitive movement (100’s of times daily) The I move on to the next area, taking breaks and maintaining what I have. The pool, a pilates reformer and my stretching strap have been my best friends during this time. Everything I do is fairly gentle, there is pain involved but mainly with the prolonged stretching. I’ve also found moving your knee in many directions (repetitively) helps. Don’t just do the one directional exercises they show you at PT. Your scar tissue is binding your knee from moving in all directions. This was key for me.

Everyone with this works hard at PT, anyone who experiences the debilitating pain and loss of function would do anything to fix it. I can’t say if what I’m doing would work for others but it is working for me. I NEVER thought I’d be close to where I am today. With each band of tightness I stretch out it opens up a new one to work on. I also find taking an anti inflammitory really helps with progress. When I stop taking them (take breaks) I notice the difference with my progress. I try taking them every other day, etc as it can’t be good for my liver. Progress is so slow I barely notice it happening.

I need to work at it to maintain what I have. I’m not sure if that will ever change, now I’m working to maintain a knee with good flexion and more importantly it is much less painful.

Don’t give up, it might work. Take it one day at a time. Give your self a day off occasionally.

I’m happy to talk with anyone with details about my experience, email me.

Rick, i’m trying to stay positive! But 110% agree with you. I’m on more meds than I can deal with. I feel like an 80 yr old in a 35 yr old’s body. I wish I could run around my yard with my kids the way I used to. There are positive stories! Check out Arthrofibrosis on facebook & more insite/stories on KNEEguru. There is a lot to digest on there. Good luck!

Hi Rick, you live in Colorado, have you looked into this clinic; it’s in Vail, Co? http://thesteadmanclinic.com/Index.asp When I was in my fight with arthrofibrosis, I looked into it. They specializes in arthrofibrosis but I live in Ca. I however, found a doctor in Palo Alto who studied at their school to learn about the disease. I also found a lot of information on this website about it. http://www.kneeguru.co.uk/KNEEnotes/#.VXmvDvlVhBc I had my ACL replaced in December 2011. Had two manipulations then found Dr. Colin Eakin. After 2 years on this journey, my ROM is at 125, I can walk normally and run. Email me if you need details. I would love to try to help kklassen04@gmail.com Good luck!!

Rick, I just want to say that I don’t think family and friends ever do understand. It took me a while to realize it. But then I think we who suffer don’t understand the situation and why it is happening either. I am 45 and I often feel like I won’t be able to do fun stuff again. I hope that it works itself out though. My thinking right now is that I am going to try to force it good. Not sure how yet. I do refuse to give up. We are too young to give up. I wish you the absolute best of luck tho. You are definitely not alone.

i have gone through both knee TKR at indore ,before 2years back ,but still i am not o.k.now i haerd about ahospital at ahemdabad (gandhi nagar)i dont know all detais but you may collected from dr.dinesh shah ujjain m.oil no.is -9301137411as he was carried the TKR of his wife and that was very sucessful.it is my suggestion i am not a agent/repreentative of any hospital/co. or doctor.

Don’t understand why the Steadman Clinic won’t take you as a patient due to the TKR? I thought that is what Heidi and others are talking about. I also had TKR one and a half years ago and need help!! Did you find someone to help you?

Sandra,
I responded to another comment above. To clarify, I was talking about the Steadman Clinic treating cases of arthrofibrosis in non-TKA cases, but my knowledge is only on Dr. Singleton’s practice.

Though Dr. Millet is a shoulder specialist, he does treat arthrofibrosis. Dr. Hackett treats is too. I don’t know if either one will see a TKA case though.

I am 26 years old about to be 27 soon. I had an acl and lateral meniscus tear November of last year then reconstruction January of this year. Six months of pt and struggle for Rom and multiple second opinions finally got my second surgery in July for removing scar tissue from arthrofibrosis (loa) and a mua with it. Under the table I was told my acl was misplaced and making it impossible to get full range so it was taken out. I am 2 months post op and still stiff. Had improvements after first week maybe second but after it stalled out and at times worst. Is there any arthrofibrosis experts in maryland or closeby or only in Colorado. Thanks, I wish there was someone who I can talk to who has been troughs this or is going through this

Jason,
Do a control+f and search “Heidi.” You’ll come across a comment I made earlier about seeing the right surgeon and why that’s important. Since you have a complex case, I’d highly recommend seeing Dr. Steven Singleton at The Steadman Clinic. I often tell my clients “seeing the wrong person saves you neither time nor money.”

I would highly recommend Dr Millet at the Steadman Clinic. I had 6 prior surgeries on my right and 4 on my left which left me with a frozen knee on the right and a noisy clicking knee on the left.Several surgeons worked on me elsewhere but were only able to help me improve my motion on the left but my right got worse.After one procedure Dr Millet has my right knee at 130 degrees already and it will continue to improve over time. He just did my left knee last week and its healing and smooth with no catches or sounds now but some swelling which will take several more weeks to subside. I was very depressed and frustrated over the sumeer as I have been dealing with this since May 9th. I finally had my first surgery in October and my second in novermber….I feel very happy and satisfied with my results so far…As a physician it took me over 5 months to find this site and the information about the Steadman Clinic and I only wish I had found it in the summer..Thanks to this website and youtube where Dr Millet has a video on the atherofibrosis surgery I was able to make the right choice!!!!

I highly echo the recommendation for Dr. Millett. I had been through a total nightmare with inappropriate treatment for an ACL / meniscus repair. Instead of being able to return to my sport, I was unable to walk normally and was in constant high levels of pain. I found Dr. Millett through a website, Knee Guru, and made my own diagnosis of arthrofibrosis. This was after nine months of suffering and being told, essentially, that it was all in my head and that I should work harder in PT!

Dr. Millett performed an extensive lysis of adhesions and I have been doing very well for over ten years. I also had appropriate PT for some time afterwards. Dr. Millett has written extensively in the leading orthopedic journals about arthrifibrosis. He is both a researcher and a practitioner.

I also encourage anyone to start with one of the practitioners listed on this site rather than waste time/money/incur further pain.

I want to recommend to all Bonesmart.org. I had TKR that had aggressive scar tissue complications. At 2 months I had an MUA. It wasn’t until 6 months that I heard aggressive scar tissue and arthrofibrosis. It all gets tossed at anyone so suddenly and YES, the doctors don’t have enough time to give you to answer your questions. Bonesmart.org is a great place to network with people all over the world with knee and hip issues. They become a great support network. It is supervised by medical professionals with YEARS of experience in the field. Most people follow the curve and don’t have the exceptions. This site tends to congregate the exceptions, which is great. We need each other, too. They have a great medical library and folks to help you understand the terminology, too. Check it out. You will be glad you did!

Hi Jason, sorry to hear you got all this at such a young age. And I definitely know the struggle of having to go through this and having no one to talk to who actually understand. I myself am 27 about to turn 28. And I’ve torn my ACL and meniscus in 2013, have gotten surgery for ACL 2014 and haven’t been able to be at my normal moving point since surgery. It is now almost a year after surgery and after getting a second opinion and finding out I have arthrofibrosis I feel like this journey will not end anytime soon. I’ve gotten a corticosteroid injection in my knee yesterday. And will be starting pt at their own pt specialists, beside the pt I already had since surgery. So I will be training heaps starting next week. I do hope this all will make a change…I know my orthopedist wants to do surgery once there are no results from this corticosteroid injection. I feel lost most of the time…and it is a lonely road. Friends are supportive but they don’t understand. I can’t do much and have a social life. Even my study has to suffer from this…going from an active lifestyle and social life to being alone all the time and people not understanding my situation is hard. I’m glad I found this website and I feel good about the fact that everybody can be super supportive to ech other on here. I’m from the Netherlands and hope to be travelling to the states end this year. But besides all this I also got a DVT after surgery so that’s all so hard still.

I have arthrofibrosis in my right hand as a result of a slip and fall injury where I broke a bone in my wrist and radial bone in my arm. I contracted chronic regional pain syndrome and experienced a lot of swelling. After my cast came off, my orthopaedic surgeon kept saying “don’t worry about the swelling” when I complained to him my therapy was not progressing fast due to pain and swelling. I have been going for physiotherapy and Aqua therapy since April this year. Since the orthopaedic surgeon did not worry about the swelling, I now have lost the function of my right hand, can’t make a fist or grasp things properly, can’t write or type for very long. I type all day as a tech support specialist, so unsure if I will ever be able to return to my job that I have been doing for 24 years.

Hello Dee I experienced the same thing what has improved my condition was surgery the swelling develops excessive scar tissue which makes joints stiff and full range motion difficult removing the scar tissue will allow more range and motion yet a long recovery and long term Physical Therapy but worth it you can return to your job make an appointment with a hand surgeon who is familiar with athrofibrosis he can help you. I had limited use of ring finger and pinky on left hand since surgery that was in November, I don’t experience the constant pain I use to have I still have some challenges ahead but overall I’m felling a lot better.

I am in the same place as you are Dee…In December I had a simple surgery on my wrist for a torn ligament…90 days later i have developed scar tissue all throughout my wrist and hand! It is very painful and i have limited use. I have now been diagnosed with scar tissue around my shoulder from an injury that was from last fall, i had a slight run in with some boards in my yard and have scar tissue that formed on my head…theses all have caused me to start researching to see what is wrong with me. i am now wondering if my struggle is arthrofibrosis?

Hi Christal, sorry to hear of your issue as well. I have Been doing extensive aquatherapy for nearly a year now as well as physiotherapy. There is a procedure called Graston where a therapist uses metal tools to scrape and break down scar tissue in the wrist and hand. It is painful. It has afforded me a bit more range of motion and a bit more use of my hand. Full recovery is unlikely, but I keep on trying! Good luck. I am from Canada.

Hi Dee, I fell and broke my right elbow in October of 2014, went to PT, Was not getting through therapy good, I had extreme pain in my right wrist, they did carpitunnel release in January 2015, I did everything PT wanted and also at home on the non PT days. I had extreme swelling and pain, I was starting to get small motion in my hand and dr sent me back to work, my PT with the hospital was over, but I still had PT available through insurance. I could not get the swelling out and got worse. I went to 2 other doctors and finally have a good one I hope. He has started me back on therapy and given me the news of having arthrofibrosis in my right hand and wrist, and don’t have motion in my right elbow. We are working soley on the hand right now. It is a constant battle and really hard. I have been on this 2nd round of therapy since April. How is your hand doing now? Do you have any suggestions that may help? I start the day out the same every day. Cannot close my hand, then with moving and working it I can somewhat close it within half an hour but need to continue the movement or I will have to start over.

I’m in Florida. Arthrofibrosis in both knees, more severe in right knee. Constant pain, burning and swelling, must walk with a walker to prevent falling. Are there any Florida orthopedic doctors that can remove this scar tissue?

I am a 58 female, who started having terrible knee pain when I was 24. I had a lateral release ( in Germany) when I was 27 which did help for a little while. I then moved to the US in my early 30s and after returned knee pain went to an old Doctor who “cleaned it out” and said I would have to have that done every 2 years. I was so despondent at that point. My husband by then got a new job and new insurance and I picked a new Ortho doctor purely by his name, lol I was living in Salt Lake City UT, but I am British, and the name Dr Bruce (Scottish) Evans (Welsh), took my fancy so that is where I went. Dr. Evans was my age and for anyone in that area he was my doctor for 20 years until I moved to WA. He works at Salt Lake Orthopedic and there phone number is 801-262-8486. I put that there because I would recommend him to anyone. The fact that the condition is incurable did not give him the attitude that we were going to sit around and do nothing. He was very proactive. We implanted sea coral to help pull out the patella to help stop it from rubbing the groove out, he tried radio therapy, oh the list goes on and on. My left knee including the German surgery and the old doc’s clean out now stands at 35 surgeries. I have no range of motion and pain is constant. I am not giving up. Above the knee amputation has been recommended for my next step. I have had 2 regular knee replacements and now I have an unusual hinged prosthesis in. Everyone has there special doctor, but Dr. Evans bless him has taken my file all over the country to medical conventions and even to England (as I said I’m British) so see if they had any ideas for him, but please call his office or if you are close make an appointment and go and see him. He does have several patients that are out of state. I am so glad I have found this site.

Are any of the specialists working with the VA? I have had two TKA done on my right knee with a total of five surgeries on my right knee. I initially tore cartilege off both femoral condyles and sheared the lateral meniscus in 2001 while on active duty. Ortho sutured the meniscus and tried microfracturing to repair the areas where the bone was exposed. I continued on active duty and finished my 20+ years as an ER/Trauma RN in the Navy, but noticed a quickening decline in my knee and increased swelling and pain with decrease flexion over time limiting my ability to perform tasks in the ER. In 2011 when i could barely walk, i had a scope done and the lateral meniscus was shredded and i was completely bone on bone in all three compartments of my knee. I suffered for six more months before i accepted my knee would never heal and had a total knee replacement. My knee never healed completely and i broke out in fevers and rashes on day three. Over the next ten months, i continued to experience full body rashes, very painful, swollen, and hot to touch right knee and extremely sensitive to the touch. At six weeks post-op i began questioning if I was allergic to my knee and was blown off by the PA and my surgeon. At 8 months post-op and no improvement, my primary had me tested and found out I was highly allergic to nickle. My knee was exposed to nickle for ten months with chronic inflmmation as well as full body systemic rashes from the nickle before a nickle free implant replaced the first one (titanium and ionized Zurconium (?)/ ceramic-like implant). Inspite of massive Physical Therapy, and trying to live a somewhat normal life, at 1 1/2 years post-op, i still have negative 10 degrees of extension and 90 degrees flexion (on a good day). The more active I am the more swelling and numbness of my knee and lower extremity. It is hot to touch, has medial/lateral instability improves slightly with an ACL brace, feels like something catches in the joint (probably scar tissue) and pain ranges from a 4-9 on a daily basis, no more than 4 hours of sleep a night even with narcotics, increases with storms and cold fronts or cold rooms, up to 3+ pitting edema below the swollen knee if I attempt to substitute teach, nursing is OUT of the question. My left knee, both hips, and back now being affected due to leg length discrepency and a antalgic gait on the right. This is a VA disability. Is there ANYBODY out there that can help???? I was a runner, swimmer, biker, hiker, nurse, teacher, and photographer and have had to give it all up. I cant get around a bicycle rotation even with the modified shortest arm on the right side due to tightness and lack of flexion. I have every symptom of arthrofibrosis and have given up on being pain free and getting a normal night sleep without waking up every 1-2 hours from pain. I came across this website and hope and pray someone can and is willing to help.

Are any of the specialists working with the VA? I have had two TKA done on my right knee with a total of five surgeries on my right knee. I initially tore cartilege off both femoral condyles and sheared the lateral meniscus in 2001 while on active duty. Ortho sutured the meniscus and tried microfracturing to repair the areas where the bone was exposed. I continued on active duty and finished my 20+ years as an ER/Trauma RN in the Navy, but noticed a quickening decline in my knee and increased swelling and pain with decrease flexion over time limiting my ability to perform tasks in the ER. In 2011 when i could barely walk, i had a scope done and the lateral meniscus was shredded and i was completely bone on bone in all three compartments of my knee. I suffered for six more months before i accepted my knee would never heal and had a total knee replacement. My knee never healed completely and i broke out in fevers and rashes on day three. Over the next ten months, i continued to experience full body rashes, very painful, swollen, and hot to touch right knee and extremely sensitive to the touch. At six weeks post-op i began questioning if I was allergic to my knee and was blown off by the PA and my surgeon. At 8 months post-op and no improvement, my primary had me tested and found out I was highly allergic to nickle. My knee was exposed to nickle for ten months with chronic inflmmation as well as full body systemic rashes from the nickle before a nickle free implant replaced the first one (titanium and ionized Zurconium (?)/ ceramic-like implant). Inspite of massive Physical Therapy, and trying to live a somewhat normal life, at 1 1/2 years post-op, i still have negative 10 degrees of extension and 90 degrees flexion (on a good day). The more active I am the more swelling and numbness of my knee and lower extremity. It is hot to touch, has medial/lateral instability improves slightly with an ACL brace, feels like something catches in the joint (probably scar tissue) and pain ranges from a 4-9 on a daily basis, no more than 4 hours of sleep a night even with narcotics, increases with storms and cold fronts or cold rooms, up to 3+ pitting edema below the swollen knee if I attempt to substitute teach, nursing is OUT of the question. My left knee, both hips, and back now being affected due to leg length discrepency and a antalgic gait on the right. This is a VA disability. Is there ANYBODY out there that can help???? I was a runner, swimmer, biker, hiker, nurse, teacher, and photographer and have had to give it all up. I cant get around a bicycle rotation even with the modified shortest arm on the right side due to tightness and lack of flexion. I have every symptom of arthrofibrosis and have given up on being pain free and getting a normal night sleep without waking up every 1-2 hours from pain. I came across this website and hope and pray someone can and is willing to help.

I am 76, used to be very active until my knee accident. I am looking for an AF specialist and would appreciate any advice. I fell and landed on my left knee in April 2014. I tore my ACL and meniscus. On May 9, I had TKR at Hospital for Special Surgeryin NYC. I then spent a week at Rusk rehab, which was a waste of time as I got only 3 hours of PT daily. Then I transitioned to PT in my home area on Long Island. I was improving, although my ROM was not very good. But then I developed a large hematoma on operated leg. I forgot to mention that I am on blood thinners, so surgery is always risky for me. My knee was immobilized by the hematoma and my surgeon performed a manipulation on July 31. It didn’t work. My ROM is about 15-95. My leg is still bent. I limp. Then I started with an excellent new PT, who told me I have AF, that my knee is encased in adhesions. She recommends the Noyes Clinic in Cinn. Ohio. Anyone know about it? She says Dr. frank Noyes is a specialist in AF, and that clinic has good rehab. I know nothing about it. Please advise.

Strongly recommend Dr Millett at the Steadman Clinic…I also had AF and very bad case of it for 6 months and 6 previous surgeries…I just finished having both my knees worked on one in october nad one in november and I have had great results….you can see his video on youtube on the topic of atherofibrosis…it is excellent…

I am fighting with the VA now because I have not been able to work since Feb 2012. I am in Chicago meeting with an AF specialist with the hopes of getting some relief from pain and supporting documentation so I can get 100% disability. I did 22 years in the AF and I think its a shame I can’t get the suppport I need from the VA. You are right, this is disability and its a struggle to do everyday activities without pain or without the use of pain meds.

Hi.
I had surgery in January on my right knee to fix patellar maltracking. My doctor did a lateral release and medial plication to get the knee to track straight up and down. Because of an insurance mixup, I didn’t get into PT until about 3 weeks after the surgery. I was going every day for two months and gained a flexion of 15 and extension of 90. I am now going once a week (had to cut down because one of my insurances stopped), am swimming and doing many things I used to, but believe I am suffering from arthrofibrosis. I can now flex to 11 and extend to 107 on my best days, but am incredibly stiff, have frequent popping feelings and get some pain when I move. My gait is off because I can’t straighten fully. My knee will straighten fully with the contraption my PT made, but as soon as it comes off, it bends again.

So, now I have ten visits left and am wondering if I should get this surgery everyone is talking about or if there are any other options besides surgery that I can try that I haven’t tried yet. I live in Arizona, so if someone knows a doctor here, that would be helpful. My last appointment with my surgeon was a week ago and he told me to do a prone leg stretch three times a day to get it to straighten and come back in two months. I feel that it’s time to see a new doctor. Thoughts anyone?

The question to ask is, “Who is the best person to treat arthrofibrosis?”.

I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.

I am so thankful I found this site. I had a TKR Dec 2013, I’ve always been a very active person, not over weight so I thought this would the “fix” for my knee pain and I could get on with my life. Well I was so wrong! I went to PT 2-3 times per week and did my exercises at home but could not get past 90 degress so my surgeon said I have scar tissue and I went back to surgery 8 weeks later for a manipulation. Then on to PT 5 days for 2 weeks so I could stay on top of this, then back to 2-3 days and other days to the gym. I ended up with 130 with PT force but then developed a bakers cyst so my PT said that hurt so bad I had to back off with my exercises. Went back to Dr. who said it was not a bakers cyst it was scar tissue and wanted me to go back in and have it “cleaned out” but could not tell me that was the answer. My gut said don’t do it, that upset the Dr. so I left on bad terms with him. I have gotten 2 other opinions, one saying don’t do it the says he would but might get worse. I have lost my ROM and I’m in a lot of pain. Do you think the Dr. in Vail, CO can help me. I will do anything that will help I’m at the end of my rope, can’t take much more pain. I’ve done all the alterative things I hear about. PLEASE HELP!!!!!!

I’m 39 years old and my story is just beginning. I had a partial menistectomy in Feb 2014 to repair torn meniscus. Was home 2 weeks and developed an infection which turned out to be MRSA. Was admitted for an I&D and sent home after 4 days on oral antibiotics. 4 weeks later I noticed more intense pain and heat in the knee and was admitted in April for 10 days for a more aggressive approach of 3 more I&D’s and a picc line for IV antibiotics. Was released to rehabilitation program for 6 weeks of infusion and physical therapy. I have been home 3 days and was told the tissue removal wouldn’t be done on me because of my elevated risk of infection. I have flexion at 60% and extension of 6. I haven’t been formally diagnosed with arthrofibrosis yet, was just given the medical evaluation opinion today. I have no clue what to do now or where to go from here. Any advice?

I pray that everyone here find peace, comfort and most of all results. It’s not easy to be in this position I know I am but we don’t have to let it run our lives. So let us all rise above our pain and sufferings and stay strong and keep on believing that one day it will all be over. God bless you all here and let’s keep uplifting each other.

Thank you for that uplifting message. It brought tears to my eyes. I had Rt knee Jan. 9, 2014. Had a manipulation March 19th. It’s been 6 months and my ROM is only 90. My situation is a Workmen’s compensation case. After the manipulation Workmen’s Compensation only approved 10 PT days. I was totally on my ow for a month. The last day of PT my ROM was 50. I. Rehabbed myself for a month. I increased my ROM to 82. My Surgeon appealed their decision to get more PT. They gave me 9 more days. Hence today I’m at 90. I have literally been fighting for my life. I’m back at work on limited duty. By the end of day my Rt knee is swollen, stiff, and in pain. What is so frustrating is the Surgeon does not know how to deal with a patient with Arthrofibrosis and is not really interested in helping me move forward.

Hello. I did an ACL patellargraft reconstruction in april with surgery of my meniscs as well. I have just got the diagnose artrofibrosis if my knee, and cannot stretch out my knee. I have heart that there should be a good clinic for this in norway- is that true? And if Thats the case- whats the name? Thank u so much for the help. Julie

I am looking for a AF specialist in CT. I had ACL and MCL surgery on my left knee in November of 2013. I also had some loose body in my knee removed and some arthritis cleaned out. After the surgery I developed atrophy in my quads. I have full extension but my ROM is only about 115. If my knee is not inflamed I have been able to get to 130 with force from my PT. My OS gave me Naproxen for the inflammation and my knee feels a lot better but the Naproxen hurts my stomach. I have been diligently rehabbing my knee but I get very stiff and my knee is still swollen to the point where I can’t wear jeans. My OS practices at UCONN and says I may need to have surgery to remove the AF. I’m scared that my knee may get worse. Are there any other methods to remove AF? I also keloid easily.

Hi Nikki,
I know it’s a long haul for you, but I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.
All My Best,
Heidi Armstrong
injuredathletestoolbox.com/why-i-understand/

I am sorry that you are going thru this. I live in SW RI and developed arthrofibrosis after my total knee in 2011 that left me with +10º to 70º. I was young and active. It is a brutal thing beyond words.

I did a lot of research and I was contemplating a trip to Ohio or Colorado but I ended up going up to Boston to see a revision specialist (who was recommended by a arthrofibrosis expert) and I encourage you to either go there or to the Hospital for Special Surgery in New York where there are a number of doctors who can deal with this. It is the #1 rated orthopedic hospital in the country according to US News and World Report .

I had a great experience in Boston; I not sure about his expertise with ACL but my surgeon was Wolfgang Fitz at Brigham and Women’s and New England Baptist(where I had my revision last May.). It took a long time to get an appt though. Boston has some highly rated orthopedic programs too.

I don’t know of any AF specialists in CT. The orthopedic program at St Francis has a good reputation, I got as far as going to a DR Paul Murray, who was highly recommend by others, not sure if he only does replacements but I wasn’t really impressed with this particular doctor or his manner.

My last piece of advice: get second opinions, get a lot of them.

Good luck, I thought this was a hopeless journey and it was horrible and full of bad stuff……I was lucky that an identifiable source of my arthrofibrosis stiffness and pain was found (internal rotation of tibial implant) and now a properly aligned joint has given me my life back-3 years gone but I am still here to enjoy life again.

The story of my right knee replacement in 2006 and subsequent battle with severe arthrofibrosis could fill several volumes. I had never had any prior surgery and therefore had NO idea I would be plagued by scarring immediately…..despite my using CPM machine for months and extensive physical therapy. Problems started even before the replacement when I had an arthroscopy and scar tissue appeared very quickly. A manipulation did no good. Following the total replacement in 2006, I had yet another arthroscopy to remove yet MORE scar tissue and then in 2007 I had a partial revision with MORE scar tissue removed. Despite all my efforts, 8 years after the replacement every step I take is uncomfortable; I cannot stand in one place for more than a few minutes without extreme stiffness and swelling, can’t walk down stairs normally or sit in a theater seat without extending my right leg out into the aisle because it is “stuck”………my knee replacement ruined my life and am 68 years of age. The most recent surgeon who agreed to see me told me this is a “permanent” condition and that scar tissue “is like cement; once it’s there it’s there for good”…..WHEN will there be some help for patients like me???
I would never consider another knee replacement and though my left knee is not great, it will NEVER be replaced.

Hi Heidi: I live on Long Island. I had my surgery at the Hospital for Special Surgery in NYC which is supposed to be one of the best orthopedic hospitals in the country. They pretty much blew me off and that surgeon told me it was a permanent condition. I have tried everything to try to gain more movement and range of motion, all maner of physical therapy, water therapy, acupuncture, and more with NO improvement. The whole leg feels like a piece of wood. I am unable to travel a long distance from home for treatment and live for the day SOME doctor will come up with an answer for me but I’m not counting on it.

I am a 72 year old woman. I had left hip arthroplasy September, 2013. I have since developed extensive arthrofibrosis along the anterior aspect hip joint. There does not seem to be anyone in the Washington D.C. area that specializes in this problem. Can you help?
Thank you.
Pat Haskell

There is no disrespect intended in my comment — there is perplexity. For the life of me I do not understand the logic in continuing to make people believe that the only chance they have for a cure (which at this point does not exist) for this horrendous condition is to travel to one or two particular facilities. I have read numerous remarks, diaries and blog entries on several websites about individuals who traveled thousands of miles from home, remortgaged their house, maxed out credit cards, relocated for months at a time to attend “specialized physical therapy” at “world renowned centers” manned by “arthrofibrosis experts”; yet, what I don’t see is anyone (with the exception of 2 or 3 who took it upon themselves to do their own PT at home–no clinics involved) saying they are cured.

What I do see is their arthrofibrosis recurring just like mine and the need for their “experts” to perform numerous surgeries on them, just like my OS has performed on me, constant careful PT, inflammation control, pain control, etc. Quite frankly, I don’t see any of their outcomes great enough or different enough to perpetuate this misconception. While it is true that most OS’s don’t ever see a case of true arthrofibrosis in their entire career, that does not mean that the only ones capable of treating it are found listed on several websites.

My OS never did a fellowship at the Steadman Clinic yet he has the brains and skill necessary to perform LOA’s and other procedures on me “properly with a tiny heat probe” so as not to cause massive bleeding into my joint. Is it his fault if my body goes ballistic? NO. Has he done everything humanly possible to give me the best chance at a different outcome? YES. Am I following the so-called AF rehab protocol? YES. Is he caring, compassionate, a good listener, willing to try anything to help me? YES. Did I need to travel thousands of miles from home? NO.

I think people better get a grip on reality. Are there some horrible orthopedic surgeons out there? You betcha and I saw my share; but this notion that you are doomed if you don’t go flying off to see an “expert” is completely ridiculous. There is no cure for arthrofibrosis There is not one single surgeon who can tell you that you will be cured or that you will only need one surgery or that if you follow a particular PT plan your arthrofibrosis won’t come back.

Face it folks, our body is what is causing our problem and until someone figures out what triggers arthrofibrosis and how to stop it you can fly wherever the heck you want but I have gotten the same results with my OS as they have with theirs.

Dear Christine: I totally agree with your observations about this most daunting and frankly debilitating condition. I have tried everything – including more surgery – which definitely only exacerbated the problem….it is our body’s reaction to the invasion of the surgery but WHY can’t doctors find out what causes SOME of us to develop arthrofibrosis while most people do not? I never had any surgery prior to my knee replacement so there was no way I was prepared for this outcome. I was outraged when the surgeon I saw who told me that scar tissue was like cement – Not something a patient wants to hear but unfortunately, true. If I could get even a small amount of relief from the terrible stiffness and lack of movement from my knee, I would be overjoyed. I hope that during my lifetime some genius comes up with an answer for us.

I agree with you Christine. In fact after my PT’s in Indiana with a doctor who is supposedly an Arthrofibrosis specialist but couldn’t make progress after a year and told me he could no longer see me due to no progress, I asked him “so who do I see?” He gave me the number of the Steadman Clinic in Vail and sent my records. I received a phone call from Dr. Steadman’s Asst. and was told they couldn’t do anything for me and the reason given was fear of making my scar tissue worse. It was a few months later that the woman who told me about astym gave me the number of the local therapist who did it and I went. Though lengthy due to the amount of scar tissue in both knees, their protocol helped me so much and I was fortunate the therapist is in the town I live in!

I’ve had both of my knees replaced, the left in June 2010 and the right in February 2011. Unfortunately, my surgeon didn’t explain that I have arthrofibrosis or I may have delayed having the right knee replaced so soon. I’ve had other issues that have complicated my situation. I had back surgery in June of 2013 to remove a stenosis that was rubbing my sciatic nerve. This back surgery was successful and I’m actually able to walk a little more than I had been doing. I trying to improve this each week, but I keep having problems with my knees and I have resorted to walking with a walker lately because of a soft tissue injury and pain. I also had an injury to my right knee in May of 2012. I feel if I would have been fully educated on my condition I would have been much more protective of my knees, like I am now. The range of motion for my right knee is about 56 degrees. My left knee may be around 80, probably more like 75. I struggle getting up and down off of furniture, usually having to sit on pillows to assist me in getting up. I can’t comfortably go to concerts or movies because the seating is too low to get up from. Is there a doctor in or near Florida that can consult with me to see if I would be a candidate for surgery to move this scar tissue and place me in agressive physical therapy to regain some of my range of motion to make living more comfortable? Both of my knees hurt constantly, the right being the most painful. I really appreciate any help you can provide.

1. Seattle area – I am looking for the BEST doctor to do arthroscopic surgery on arthrofibrosis in my right knee, after a total knee replacement.

2. And does a lot of experience doing this type of surgery, for this reason, make quite a bit of difference in its outcome?
Given the rarity of this problem, I would really like to know if a specialist who DOES THIS ALOT, will do better, increasing the odds of success?

3. And does a steroid injection or injections help break down the arthrofibrosis?

Cynthia – I would recommend you talk to Peter Mandt, Proliance Orthopaedics, Bellevue and Issaquah. He repaired my knee after ACL reconstruction in 1990 (done by a different surgeon). Back then, the standard post-surgical treatment was extended immobilization and non-weight-bearing for, IIRC, six weeks. I developed arthofibrosis and didn’t respond to manipulation under anesthesia. A year later, Peter removed a golf-ball sized hunk of scar tissue from my knee. Another year later, he relocated the patella tendon because of stricture.

I am at my wits end. I have this disease and there is nobody who can help. I live in Tennessee and have had one surgery and manipulation. My leg is in a fixed position bent at the knee. For two years now I go in a wheelchair because I cannot walk nor stand for any period of time I am hurting now on my good side because that is where I steady all of my weight. I am just curious can someone help or guide me in the right path? Thank you!

When I was 15 I tore my ACL. I’m now 17 I try to work out about but struggle with pain in my left knee. Its often swollen, constantly irritated and I even struggle with sitting in the car. When I’m standing my right knee is straighter than my left bad knee which is bent. I haven’t gotten back to running and being active like I use to be. I started doing some research and I think I must have scar tissue build up or arthrofibrosis. After my ACL surgery I went to a physical therapist who didn’t really give me the proper attention. I was late getting my knee to straighten out. I finally switched physical therapist when I realized my knee was showing little progress. My new physical therapist must have thought I was not at all diligent with exercises because my knee hardly progressed. I did do my exercises for physical therapy and more. I would love some feed back based on my symptoms because at this point I’m at a loss of what to do. I feel old and excluded out of anything active. Please help with advice to get my health back on track. And does anyone know of in specialist in Seattle ? If

In terms of true patience (severely lacking in many so-called arthrofibrosis “experts”), presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”

I tell my clients that seeing the wrong doctor saves one neither time nor money.

Treating arthrofibrosis is more like art than surgery, and many orthopedic surgeons are break/fix doctors–not artists.

DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out most likely equals use of the debrider tool. Read on.

Many (or maybe most) surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman (and now Dr. Singleton) doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Many other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.

Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 4 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.

There is no disrespect intended in my comment — there is perplexity. For the life of me I do not understand the logic in continuing to make people believe that the only chance they have for a cure (which at this point does not exist) for this horrendous condition is to travel to one or two particular facilities. I have read numerous remarks, diaries and blog entries on several websites about individuals who traveled thousands of miles from home, remortgaged their house, maxed out credit cards, relocated for months at a time to attend “specialized physical therapy” at “world renowned centers” manned by “arthrofibrosis experts”; yet, what I don’t see is anyone (with the exception of 2 or 3 who took it upon themselves to do their own PT at home–no clinics involved) saying they are cured.

What I do see is their arthrofibrosis recurring just like mine and the need for their “experts” to perform numerous surgeries on them, just like my OS has performed on me, constant careful PT, inflammation control, pain control, etc. Quite frankly, I don’t see any of their outcomes great enough or different enough to perpetuate this misconception. While it is true that most OS’s don’t ever see a case of true arthrofibrosis in their entire career, that does not mean that the only ones capable of treating it are found listed on several websites.

My OS never did a fellowship at the Steadman Clinic yet he has the brains and skill necessary to perform LOA’s and other procedures on me “properly with a tiny heat probe” so as not to cause massive bleeding into my joint. Is it his fault if my body goes ballistic? NO. Has he done everything humanly possible to give me the best chance at a different outcome? YES. Am I following the so-called AF rehab protocol? YES. Is he caring, compassionate, a good listener, willing to try anything to help me? YES. Did I need to travel thousands of miles from home? NO.

I think people better get a grip on reality. Are there some horrible orthopedic surgeons out there? You betcha and I saw my share; but this notion that you are doomed if you don’t go flying off to see an “expert” is completely ridiculous. There is no cure for arthrofibrosis There is not one single surgeon who can tell you that you will be cured or that you will only need one surgery or that if you follow a particular PT plan your arthrofibrosis won’t come back.

Face it folks, our body is what is causing our problem and until someone figures out what triggers arthrofibrosis and how to stop it you can fly wherever the heck you want but I have gotten the same results with my OS as they have with theirs.

My name is Theresa.
Christine you said a mouth full. I had my first knee surgery in jan of 2014 it went well for a while then my orthopedic doctor jump right on it and I had to have a manipulation in march of 2014. Like the first time it went well for a minute now I have to have a knee revision in June 2014. What I’m trying to get at is this. My doctor is so wonderful in his profession kind, caring, understanding etc…… I didn’t have to go all over the states to get help for my problem. We sat down and discuss what to do next. He tried everything under his power to make things right for my left knee. Right now I can’t walk long on that knee it hurts so bad. You are right there’s no cure only comfort and that is what my doctor has given me. We have an understanding towards each other and as I’m sad and hurting over this he is too. So have faith in your doctor especially if he or she is doing all they can do for you and for all patients. God bless you Christine.

I’m a 29 year old who has had an ACL reconstruction 3 years ago (tore the ACL playing soccer). I’ve had 2 manipulations since then, but still have a lot of scar tissue in the knee joint. My surgeon discharged me saying there isn’t much he can do. But the abnormal gait is causing me back pain, and causing other leg pain. A little frustrated because it’s hard to walk for long periods or even workout. Are there any specialists you could recommend in Toronto and/or Canada?
Thanks!

In terms of true patience (severely lacking in most so-called arthrofibrosis “experts”) , presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”

It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.

Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.

For everyone who is reading: DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.

Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.

Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.